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’

 

Cohen’s mistake is to call for us to be conservative both in language and politics.

Nick Cohen makes three important points. In his Spectator piece ‘The Cheating Language of Equality’ and its abridged version in last Sunday’s Observer ‘Honeyed Words do nothing to curb prejudice against the disabled’ he notes how insistence on certain adopting forms of language when discussing issues connected to disability have done little to obstruct deep and damaging cuts to services and financial support. Indeed, I would share his analysis and add that the very ideas and language advocated by people such as myself may also sometimes have been weaponised to make the case for cuts, or certainly may have had the effect of diminishing public concern. Cohen also bemoans the reliance on what he labels ‘euphemism’, arguing that ‘it is easier to remove state support if you describe disabilities in a sing-song voice so soft and light you make them sound as if they are not disabilities at all.’   It is certainly true that the story of disability rights and the language used to tell it has proved extremely weak in the face of the story of spending cuts and the need to ‘live within our means.’ And finally, Cohen argues that language used to describe disability, however often it is reinvented, is appropriated as terms of offence by the wider population, suggesting that while the language may change, prejudice appears able simply to adapt.

These points merit being taken seriously. However, Cohen’s insistence that ‘The notion that you can change the world by changing language gets history upside down’ crumbles in the face of much recent evidence on the power of narrative. Language does lead to change, as ‘living within our means’ has proven to austerity, as ‘take back control’ has proven to Brexit, as ‘make America great again’ has proven to Trump and – more positively for progressives – as ‘equal marriage’ has proven across the Western world in securing the rights of gay and lesbian people to marry. Of course, such language wasn’t invented or deployed in a vacuum, and speaks to and harnesses other currents of change, but it plays a crucial role in shaping our views, feelings and actions.   Indeed, Cohen has spent a great deal of his considerable journalistic talents lately arguing (rightly in my view) that the Labour Party should adopt in full the International Holocaust Rememberance Alliance Working Definition of Anti-Semitism, essentially a guide to the language, statements or ideas that may constitute anti-Semitism and hence which should not be used. This is surely recognition of the power of language to shape the world for good or ill?   The deliberately deployed narratives of others have succeeded where disability advocates have recently failed in mobilising feelings, motivating people and guiding their viewpoints, choices and actions.   In sum, it isn’t true that language doesn’t lead to change, but it is true that language can fail to if poorly chosen or deployed.

Useless eaters

In his Spectator piece, Cohen says ‘Half the words now on the banned list were kindly meant in their day.’ Let’s unpick this a little. When the Mental Deficiency Act of 1908 used the terms ‘idiot’, ‘imbecile’, ‘feeble-minded’ and ‘moral imbecile’ it did not do so for benign reasons or to objectively describe people with learning disabilities, but to classify them as lesser human beings and hence justify discriminatory action, such as involuntary sterilisation and institutionalisation.   Lest we forget the popularity of eugenics in Britain prior to the Second World War, not least among national heroes such as Winston Churchill and those of the left such as Sydney and Breatrice Webb. In Germany in the 1930s Nazi propaganda described people with learning disabilities or mental health problems as ‘useless eaters’, emphasising the costs involved in keeping people alive, as a prelude to their extermination, which in turn served as a dry run for the Holocaust.   Only after the horrors of Nazi Germany became clear did eugenics lose (open) popularity in the UK, but its legacy is all around us, including in the language we use to deride one another. Cohen focuses on the word ‘spastic’ as an example of a word that was ‘kindly meant’, noting how Scope was previously the ‘Spastics Society’. But then, for Beatrice and Sydney Webb, so was eugenics (albeit through forced sterilisation and deprivation of liberty, not killing).   The issue today is not how we choose to describe this or that impairment or health condition, it is how we avoid describing our fellow human beings in ways that dehumanise, degrade and which render them vulnerable. A person with cerebral palsy is not ‘a spastic’, they are a person, who has cerebral palsy.   A person using a wheelchair is not ‘bound’ by it, they are liberated by it.  A person with Downs Syndrome is not ‘suffering’ from it, it is simply part of who they are.

Hence, when Cohen concludes his Spectator piece by arguing ‘if you want to be radical in your politics, you must be conservative with your language’ one must wonder whether he is calling for a return to language that degrades and dehumanises (such as referring to a ‘simple man’) and if so, to what ends?

This is where the issue does go far deeper than language, for Cohen is insistent on equating disability with loss, suffering, pain, incapacity and so on.   While Britain’s post-War welfare state may have abandoned eugenics and embraced the idea that disabled people (especially disabled veterans) could play a productive role, while it may have closed down many institutions, adopted anti-discrimination law and directed resources at supporting people to live in the community, disability continues to be construed overwhelmingly as a ‘deficit’ and it is the extent of this deficit that determines eligibility for State support. Hence governments since 2010 have been able to make deep cuts while arguing that they were protecting ‘the most vulnerable’ – those deemed to have no productive potential – and disability advocates are forced into a game of having to plead their vulnerability and lack of productive potential (attributes which in history have underscored prejudice and discrimination and which as noted above been exploited to sterilise, institutionalise and to kill) in order to safeguard what meagre income and life and limb services remain available to them.  There is nothing radical or progressive about maintaining this situation, or employing language that reinforces it, but without a better story it is understandable that people should keep telling it.

In the first excellent episode of his Radio 4 series The Tyranny if Story, the journalist John Harris talks to the Ed Woodcock and Yannis Gabrial about the working parts of all stories, and how effective communications embody these. In summary, all stories involve a hero (or subject), an adventure (or mission), the possibility that things will be derailed (or an antagonist), the capacity of humans to solve the problem, and emotion (a happy ending, or a tragic ending).   They argue that it is these ‘opposing forces’ that cause us to lean in and listen.   As humans, we need not hear the whole story. A few words – make America great again; take back control – are enough for us to fill the gaps and understand the story

Disability rights advocacy has been about changing the components of the story: where the hero of the piece is not State or voluntary charity, but disabled people themselves, where the adventure is not towards being looked after well, but being the author of ones own life and taking part in society on an equal basis with others, where the antagonist is not the persons impairment or health condition, but the barriers that society has constructed that deny people their right to participate and take charge of their lives, where disabled people are not objects ‘saved’ by others, but equal partners in bringing about social change.

That new story clearly requires a very different form of language, otherwise it cannot be told, and won’t be heard. For any narrative to be effective it has to convey the goals of the storyteller, to avoid rallying feelings, thoughts and ideas that stand in the way of achieving them, or which provide the means to pursue contradictory goals – such as cutting support.

Disability rights advocates could then certainly do with a new compelling narrative, one that relies less on neutral words and euphemism (where terms such as inclusion or independent living, which have no meaning in the wider world, are accompanied by long winded and often contested explanations as to what they do or don’t mean) and which is able to command public support and stand firm in the face of attack.   It has to make clear that investment in financial and practical support is investment in freedom and opportunity, not ‘welfare’, and consciously avoid the tropes which reinforce ideas of passivity and vulnerability. This initial work by the Frameworks Institute offers some useful insights into how a more compelling narrative might develop, but there is much work still to be done.

Cohen is right to say that change won’t come simply because language is policed.  But language change goes hand in hand with social change.  Ultimately, Cohen’s mistake is to call for us to be conservative both in language and politics.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Feeling a part of society, not apart from society – the psychology of inclusion

“Well how sad. A city with such appalling accessiblity as Bristol really hurts. To be made so unwelcome by a place’s physical make up is like an apartheid that can only change when the environment does. To live with tears at your soul.”

Mik Scarlett, via Twitter

Perhaps as a result of its Marxist origins, disability rights discourse in the UK has tended towards a highly materialist account of the barriers and inequality faced by disabled people: focusing on income, physical access or employment discrimination for example.  Even when talking about prejudicial behaviour, such as disability hate crime, the feelings of those who have endured it, or who fear it and the impact on their sense of their place in the world is rarely discussed.

Various things have collided in the past year to cause me to think about this: during some work I did talking to people with learning disabilities about employment, interviewees consistently highlighted having a role, status and a sense of purpose as being at least as important to them as having money in their desire to work, or in having found a job; conversations begun and curated by Mik Scarlett on social media about the emotional impact of being locked out of society by inaccessibility that says ‘you don’t belong’; the fact that 60% of disabled people who voted in the EU referendum put their cross next to Leave, despite so much evidence that it was not in their self-interest to do so; and this week Margaret Hodge’s recollection of her father’s advice “you’ve got to keep a packed suitcase at the door, Margaret, in case you ever have to leave in a hurry”.

Each of the above speaks to the psychology of inclusion and exclusion and of the desire, as Baroness Jane Campbell recently put it ‘to feel a part of society, not apart from society.’  Looked at through the lens of psychology – both disabled people’s own and that of the wider community – the past decade of cuts to financial and practical support can be seen not only for its damaging effect on material wellbeing, but equally for the way it has often appeared to dismiss disabled people’s very right to be in the world.  Ditto arriving in a city and being literally shut out.   On the flipside, in foregrounding how such negative developments and situations make people feel there may be greater chance of engendering empathy, than in only describing situations that non-disabled people have little if any experience of.   Feelings of hurt, loss, fear and hope are universal; experience of disabling barriers is not.

Great strides have been made on disability rights over the past thirty years, but inclusion remains precarious and far from guaranteed.  Despite the language of rights, inclusion remains something that can be given or taken away and so long as that is how disabled people feel about the world, we are way off our goals,

A recalibrated disability rights agenda should foreground psychology – how people feel about the world they inhabit – and make disabled people’s own sense of purpose, status, belonging and control the chief test of progress, its narrative to the wider world and focus for action.

 

 

 

Middle aged people – time for our revolution!

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So I’ve just turned 47, I live with my partner who works full time and we have a beautiful daughter aged 4 who is about to start school. I’m self-employed with a ton of work, which helps pay off a whopping mortgage than comes of living in London, which for all its many advantages is toe-curlingly expensive.  240 miles away, near Wigan, live my mum and my dad, who has Alzheimers. They increasingly need support.  That support seems incredibly hard to find.

How many of you have read that first paragraph and related to at least a fair chunk of it?   How many of you are – like me – trying not to have to imagine what happens when your mum’s not around or able to provide that support? How many of you have found it easy to sit down and plan with your parents, or to find out what’s available?  How many of your are increasingly realising that the answer is: not very much?

How many of you see yourself, your situation and your anxieties reflected in the public debate about social care?  Several years ago it was common to talk of the ‘sandwich generation’ or the ‘care crunch’ but it doesn’t seem to feature anymore (nothwithstanding that it’s very negative way to frame it, which might explain why).  Is our overriding priority really to inherit whatever assets or equity our parents leave behind? Why is that at the forefront of the debate?   Or is it to ensure our collective wellbeing: that our mums and dads will be okay and lead the lives they want to, but without huge personal cost to ourselves and our families today and into the future?

Failing to deal with this today will mean costs that will play out down the generations as we in turn require support but don’t have the private resources or public services to access them – is this the anxiety we want to pass on to our own children?

Unlike adult social care, the debate about childcare is no longer one which regards it as a personal private matter, but a public one.  It makes sense to co-invest as a society in childcare, for the benefits of child development, employers, the economy and our own individual wellbeing as parents.  It is also a vote-winner:  with austerity as its backdrop, a Conservative government introduced 30 hours a week free childcare.  And it hasn’t negated the duty to be good parents, or created a literal ‘nanny State’.  We need to think about support for adults in the same way and co-invest:  free, high quality support to protect and promote the wellbeing of adults requiring support and those with who they share their lives, that of their adult children and grandchildren, in the interests of employers and the economy.

We will inevitably have to look out for our parents as they age more than we did when we were all younger, and that’s quite right, just as parenthood brings so many more responsibilities.  But that’s fundamentally different from having to put our own lives on complete hold to provide that support, just as most of us don’t anticipate giving up work to look after our children until they go to school.

People like you and me need to marshal our collective voices, lift our heads up above the immediate challenges we face, set forth a compelling alternative vision and be seen as a political force to be reckoned with.   We need to put an end to the ‘carers as heroes’ narrative peddled by politicians and NGOs, not because those providing care and support aren’t often making huge sacrifices, but because they are, they shouldn’t be, and it’s coming at a huge – and increasing – cost to them, the people they support, their families, our economy and our society.

England needs a ‘wellbeing revolution’ through a collective investment in our shared future.  Ours is the generation to bring it about.  Who’s in?

 

 

 

To lead by example, the UK government should embrace disability inclusive development at home as well as abroad

Next week the UK Government Department for International Development (DfID) will host a ‘Disability Summit’, with the express aim of putting disability at the heart of international development.   DfID is a world leader on international development, and more recently on disablity inclusive development.   Disability inclusive development make sense given – as in the UK –  disabled people form a disproportionately high percentage of all living in poverty globally.  It is not a matter of ensuring that implementation of the Sustainable Development Goals reaches disabled people; it’s a fact that the goals will not be reached unless disability is at the very heart of how they are implemented.  Fusing the UN Convention on the Rights of Persons with Disabilities (CRPD) with the SDGs offers a clear pathway for achieving this.  DfID should be celebrated for showing such leadership.

However, given the impact of austerity measures and reforms on disabled people’s rights here in the UK, and the damning verdict of the UN Committee on the Rights of Persons with Disabilities following its examination of the UK in 2017, it is quite understandable that UK disability activists are intent on highlighting the UK government’s credibility gap as the host of this summit.  It is not only the retogressive impact of these specific measures on disability rights in the UK that creates this credibility gap, is it also the clear failure domestically to create policy coherence between the UK’s approach to ‘development’ (as in policy related to addressing disability related poverty) and the promotion of human rights and equality of opportunity.

There are, I guess, various ways UK organisations can harness the summit to highlight this credibility gap.  Some will protest the summit itself, while others are organising a parallel summit to debate these issues.  Others are taking part in the summit and plan to use their platform to both embrace and celebrate DfID’s agenda, while highlighting the negative journey in the UK.  It will be interesting to see whether it plays out in a similar way to, for example, how the deporation of members of the Windrush generation gathered media attention as a result of the issues being spotlighted during the Commonwealth Heads of Government Meeting.

Perhaps most productive would be the see the summit as an opportunity to put the SDGs on the domestic map.  The UK government is of course already subject to the SDGs.  Unlike the predecessor Millenium Development Goals, the SDGs are designed to be truly universal, but from my vantage point have yet to play any significant part in domestic debates about disability-related poverty or rights.  Rather than just emphasising a credibility gap to strive to embarass the government, why not propose a clear agenda for closing it,  asking the UK government to set forth a programme of disability inclusive development here at home in order to be the change it purports to seek in the wider world?

 

My dad, Alzheimer’s and me.

My journey into disability rights was a happy accident and while over time and through the development of friendships my professional and personal commitment and involvement have blurred, as a non disabled person I have always sought to maintain a degree of distance, offering advice, sharing information and ideas, challenging thinking, but always – I hope – in support of, never on behalf of those with lived experience.

Recently that has begun to change, not through my own direct experience, but because in 2014 my dad was diagnosed with Alzheimer’s.

I have learnt since that such an early diagnosis is unusual – for many the condition isn’t identified until it has made significant progress. In my dad there were subtle but noticeable signs that something was changing, but even the medical professionals didn’t at first think it was Alzheimer’s, describing it instead as mild cognitive impairment. Following a battery of cognitive tests they changed their minds, yet in the immediate months afterwards there was little real sign of change and there was little if any proactive support shown or signposted by the NHS, with the exception of being prescribed medication to ameliorate the effects of the condition. In effect he was discharged upon being diagnosed and everything since has been down to us.

We didn’t much talk about it after his diagnosis, until my dad saw an advert in the Daily Telegraph for a drug trial in 2016.   I recognise that for many people, including my dad, curing or halting the progress of the condition would be their ultimate preference and to achieve that, randomised controlled trials are vital. But everything about this was truly, unspeakably appalling: from the advertisement implying that a cure was already available, to turning up at the address given to find the company had moved offices, to the staff addressing all of their conversation to me and my mum while ignoring my dad, to the initial consultation overrunning and then being told the company was unable to do the tests that day and could we come back (my mum and dad had travelled from Manchester to London).   Here was a company exploiting desperation and treating the very people it needs to help it get to the pot of gold at the end of the rainbow as dispensable and invisible.   A trial in which there is a 1 in 3 chance people will receive a placebo, a 1 in 3 chance they’ll receive a low dose and a 1 in 3 chance they’ll receive a drug that doesn’t actually work is still being advertised as offering a cure to Alzheimer’s, and that, frankly, stinks.  We walked away, but still nagging in my mind today is that it might have worked.  Bastards.

What also stinks is the sheer amount of money going into such medical research in contrast with the complete absence of investment in support, as evidenced again this week with the delay in the social care green paper, and in building social inclusion. Four years on and the effects of Alzheimer’s on my dad are now apparent, following exactly the path loss of semantic memory predicts: previously intuitive tasks, like making a cup of tea, are no longer intuitive. Driving has become too risky. Money matters are all but impossible. Words are hard to come by.  Slowly, gradually, my mum is becoming what bureaucrats – but not many of the people involved – like to call a ‘carer.’  If they require formal ‘social care’ at some stage, they will have to foot the bill, despite relatively modest savings and assets. I am no longer just an observer, commentator or would be influencer of policy in this area: it now has very direct implications for me and my family.

Hence if people have wondered why I have become so passionate about the way social care is framed and discussed, it is not because I have discovered some new ‘fad’ or simply to make a more persuasive case to the public at large. Rather it is because I am seeing up close both how care and support is unavailable to people at the very point it could help extend their independence and wellbeing, placing strain on families, while at the same time social care is seen by those who may need support as a threat – as something to be resisted. Public discourse frames social care as a ‘cost’ and the ageing society as a burden. It is positioned as a way to spare the NHS the costs of caring, not as having a valuable end in and of itself.   Social care is associated with having to leave home and with losing our home and hence our security, our relationships and our sense of who we are and were we belong.   Accepting it into our lives is seen as emblematic of losing our independence, not of extending or regaining it.   As someone put it, social care is seen as a ‘broken system for broken people’ and well, who wants to go there?  The need to reframe the debate about social care is not just about winning support from those as yet unaffected, but equally about shifting perceptions among those that are, those that provide support and those that commission it.

But this isn’t of course just about social care. The All Party Parliamentary Group on Dementia has recently launched an inquiry into disability and dementia, building on previous work by the Mental Health Foundation and others such as Peter Mittler and DEEP, including submissions to the UN Committee on the Rights of Persons with Disabilities in 2017.   It is asking how people with dementia can benefit from law and policy that has evolved out of the struggle for equal rights among disabled people.  I’m meeting with Alzheimer’s Society – who are supporting the inquiry – next month to share my thoughts.

As I have said before, I would be wary of the ‘exceptionalism’ that I think has sometimes surrounded this debate. Only 42% of people classed as disabled under the Equality Act 2010 self-identify as such. Most people with rights under the Equality Act or the UNCRPD do not, nor are they expected as a matter of course, to recognise themselves or to be recognised as a disabled person, save when seeking to enforce their rights or access dedicated financial and practical support.   In this sense, people with dementia have more in common with the majority of disabled people than with the (albeit substantial) minority that do self-identify as a disabled person.   That then is a communications challenge for government and others such as the Equality and Human Rights Commission, to ensure that they are reaching the right people with information, services and support.

This fact also opens us out to seeing the strong relevance and learning that can be drawn from what others have done and that others can gain from initiatives related to people with dementia. For example, Time to Change is a major campaign which strives to end mental health stigma and has enjoyed significant government and philanthropic investment.   Many of the specific challenges it has sought to address are common to those faced by people with dementia, with stigma acting as a barrier to individuals and immediate families seeking support, telling relatives and friends and so on. Again, language is crucial, and research into how to talk about dementia productively – for example avoiding the language of ‘battling dementia’ that has surrounded news of Barbara Windsor having Alzheimer’s – is needed urgently.   Equally vital is emphasising the capabilities and contributions of people with dementia and tackling head on the ‘prescribed disengagement’ that Kate Swaffer has talked so powerfully about.  Last but not least, dementia needs to be framed as a social inclusion issue, not as one engaging only medicine or care, as now.

Within the fields of mental health, learning disability and autism, there remains a strong focus on the right to self-determination, to supported decision-making and self advocacy, often enmeshed with the struggle to live independently and to be included in the community. Bringing these ideas together with ‘dementia friendly communities’ could be hugely powerful.

Discrimination on grounds of disability, including failure to make reasonable adjustments, is hugely under explored when it comes to people with dementia, yet could provide a powerful lever in leveraging accessible services, transport and in ensuring that people are not rendered ‘invisible’ as my dad was by so called dementia specialists in the medical profession.

New technologies have a huge role to play, including Artificial Intelligence and robotics, while people with dementia should play a central role in debating the ethical dimensions of each in the context of their being developed and deployed to support people.

There’s much more to say, and I will in time, reflecting on my dad’s experience, those of my mum and how it affects me and my own family, as it surely will.

There’s nothing I or anyone else can do to halt the progress of my dad’s condition right now, and I can’t pretend that it’s not upsetting or that I wouldn’t prefer to reverse things.  But I refuse to allow despair to win over hope and I’m going to do all that I can to ensure his and my mum’s wellbeing and to use the platform, networks and relationships, knowledge and ideas I have to do whatever I can to try to change the world at large.

Together we can do this.

 

 

 

Why it’s time to change the way we tell the story of people with learning disabilities

Marking the anniversary of the BBC Panorama exposé of inhuman and degrading treatment at Winterboure View there has been much commentary this week concerning the lack of progress on respect for the human rights of people with learning disabilities. This has centered not only on the slow transition from ‘assessment and treatment units’ to community based living, but also the recent ‘LeDeR’ report into unexpected deaths and its shocking update on the gap in life expectancy between people with learning disabilities and the wider population (29 years for women and 21 years for men).

Writing in the Guardian (Seven years on from Winterbourne View – why has nothing changed?), Saba Salman ventured that ‘For all the talk of learning lessons, the biggest one of all is that if you want a national scandal to go unnoticed, make sure it involves someone with a learning disability’ and many people appeared to endorse this line, tweeting it and linking to both Saba and Alicia Wood’s articles.   I was pleased to see Sara Ryan challenge it though, noting how ‘I think there is some change afoot. The #leder review wasn’t buried as planned, inquests/hearings are now being live-tweeted. We are shining a light…’ I think this actually underestimates the change: despite NHS England’s best efforts, the LeDeR review was the second headline story across the whole of local elections results day on BBC news, from BBC Breakfast, through to the 1, 6 and 10 bulletins and the news channels, as well as radio and online, meaning tens of millions will have learned about its findings. The Inquests into Connor Sparrowhawk and Richard Hadley enjoyed similar coverage. It is simply counterfactual to suggest that such scandals are going ‘unnoticed’.   The truth is that as a result of the engagement of journalists and the amplification of social media – not least the Justice for LB campaign –  they have a higher profile than ever before.

Yet it does often feel as though for all of this profile and focus, real change continues to be elusive. There are no doubt many reasons for this: a lack of political leadership, the impact of spending cuts, the ‘liability culture’ that has infected health and social care and creates perverse action, the fact that sustainable change takes time to implement. But I want to recommend we consider something else: the impact of the way the issues are being framed and communicated by those of us who want change to come.

How could it be that such unprecedented media coverage of such outrageous injustice isn’t obviously translating into tangible public demand and political support for change? Well, one hypothesis is that the way the story is being told is devoid of any sense that it can be solved, and so the bigger the story becomes the greater people are left with a sense of fatalism rather than possibility.   Further, the way the issues have been communicated have focused on individual cases and have failed to point people to the systemic causes: to the things that need to be fixed.   By allowing the story to be told in this way, we actually weaken its impact on those with responsibility to enact change.

These are not framing challenges unique to these issues, but are commonplace and the current focus of efforts by organisations such as Joseph Rowntree Foundation in its work to reframe poverty, and Crisis in changing the narrative on homelessness.

This is not a call to sweep negative stories under the carpet. Rather, as Sir Bert Massie once said ‘only high expectations shine a light on injustice.’ Hope is preferable to despair as a lever for change. As Thomas Coombes points out:

‘Fear and threat trigger primordial base defensive instincts in the brain, which leads to defensive political impulses. Safety and calm however, encourage the upper parts of the brain, generating more empathy and welcoming political instincts.’

To these ends, I was struck by the Red Cross’s recent campaign for First Aid to be part of the formal school curriculum. Their campaign message was ‘By making first aid compulsory on the school curriculum, we can empower young people to save a life.’   The campaign aims to fix a major problem, which is that the majority of us have no idea how to administer first aid in an emergency, which means people die avoidably. If the Red Cross were to emulate our communications on people with learning disabilities the campaign message would be ‘people are dying because most of us don’t know how to save them’. Which of these two messages motivates you to think that something can and must be done?

The lesson here is to ‘dial up’ the solutions and dial down the sense of crisis. So for example, in telling the story of insufficient progress towards people moving from ATUs into the community, start with stories of success or possibility, not failure. Or when it comes to health inequalities, show the difference good practice makes in improving health and life expectancy, don’t just present the overall gap. Doing so does not diminish the sense of injustice involved, it reinforces it by showing that those with responsibilities are failing to do the things they could do, with the result that insufficient progress is being made, or that people’s life expectancy is cut vastly short.   A lesson should also be learned from the campaigns for Equal Marriage and ‘Repeal the Eighth’ in Ireland: don’t focus your message on the people that oppose you, but on your growing support.  Noone wants to join the losing team.  Tell stories of how people have realised there is a better way, the journey they’ve been on, the improvements they’ve made and the dividends to them and society.  This is about making what we want to see appear to be the new normal, not the exception. We need to stop saying noone notices and noone cares.

This leads us to the individual versus systemic issue. Individual stories – not just of the people directly affected, but of those with who they share their lives – are powerful, but at the same time if told in certain ways can give the impression that they are just that: individual, tragic stories. That means that the systemic factors lying behind them go untold. We need instead to tell a ‘thematic story’, pointing first to the systemic causes of inequality, or rights violations, with individual case studies used to illustrate it and bring it to life.  This places the focus squarely on the things that those in charge are responsibility for and that can be changed.

What I say here is not a ‘silver bullet’. I do think there is apathy about the lives of people with learning disabilities, underscored by prejudice and low expectations, which also need to be challenged proactively and in evidence based ways, including via strategic communications.   But at the same time, by ensuring focus on the systemic causes of the problems faced, by dialling up solutions and by telling stories of positive change we can harness the vast amount of notice these injustices do now attract and win more change as a result.

Here are some helpful reflections from the Frameworks Institute on how to talk about disability and human rights