You just haven’t earned it yet, Eddy

While doing the rounds at last night’s Labour Party disability reception, Ed Miliband greeted guests by asking ‘so what can we do to secure a Labour government?’   On the evidence of his speech, if he’s relying on disabled people’s vote then he’s got his work cut out.  6 months from the General Election and the best he seemed able to offer was ‘we’re not the Conservative Party.’  That will be enough for some, but tumbleweed blows through the ‘retail offer’ from Labour in terms of actual policies to improve the lives of disabled people. 

Policy is almost wholly confined to welfare reform, as if Labour’s perspective of disabled people extends little further than the benefits office.  Nothing about taking forward independent living and how Labour will end institutionalisation for good, about the importance of the Human Rights Act to disabled people and how Labour will defend it, about education and raising the aspirations and achievements of disabled children and young people, about fixing the gaps in our equality law and ensuring it is properly enforced on the 20th anniversary of the Disability Discrimination Act next year, or how Labour will ensure effective coordination of government policy and programmes on disability rights.

On benefits, Labour promise to be more efficient at implementing a policy destined to ensure 600000 fewer disabled people received support with the extra costs of living.   Regarding the Work Capability Assessment they will co-opt disabled people to help implement improvements, without any substantive changes to the test itself, despite it being founded on deeply flawed logic.   They will scrap the ‘bedroom tax’ – a populist decision which has pretty much killed dead any other options for recasting social security spending, despite in reality making very little difference to disabled people.

At the same time they will replace the Work Programme and Work Choice with ‘work support.’   We know little about this idea other than the intention that it is ‘localised,’ a welcome step but we need a lot more detail before offering our support.  In particular I would like to know what Labour’s position is on personalising employment support as proposed by Disability Rights UK last year.

Outside of welfare to work there are just two policies – to implement a freestanding law of disability hate crime and to ‘implement the United Nations Convention on the Rights of Persons with Disabilities.’

On the former I’m unclear what this will really mean for people or whether it will do anything significant to reduce incidence, improve reporting or increase prosecutions.  What I am clear of though is the need for a comprehensive, effective strategy to eliminate targeted crime and hostility and the prejudice underlying it.   On that front no proposals are forthcoming.

On the latter, well this isn’t a policy at all, but a commitment to honour a pre-existing obligation under international law that the last Labour government accepted in good faith by ratifying – with cross Party support – the UN Disabilities Convention in July 2009.  That is to say, the ‘policy’ is to commit to do that which it will be obliged as a government to do, including involving disabled people in policy development and decision making and ensuring policy and legislation is in conformity with the Convention articles (though it will be interesting to see if a Labour government does reinstate in law the duty on public bodies to carry out impact assessments and to involved disabled people, as included in the Disability Equality Duty regulations).  However, making such a commitment does throw up another enticing possibility: the UK is a ‘dualist’ State meaning that it implements its international human rights obligations through ensuring compliance of its national laws, policies and programmes, rather than incorporating Treaties directly into domestic law.  That is to say, meeting its commitment to implement the UNCRPD demands a cross cutting programme of law, policy and practice reform on disability rights.   So this ‘policy’ is actually rather interesting.  To assist a Labour government in implementing it I’d strongly recommend emulating the last Labour government who on entering office established  a Disability Rights Task Force to recommend how it could implement ‘full civil rights for disabled people.’ The 1997-1998 Disability Rights Task Force (DRTF) led to the Disability Rights Commission, expansion of the DDA to education, coverage of all employers by the DDA, its extension to transport and to the Disability Equality Duty.  The new DRTF should be given a mandate to advise the new Labour government on a programme of action to secure full implementation of the UN Disability Convention.

Now that might be worth voting for.

The Disability Rights Taskforce 2015?

Later this evening I’m going to a reception hosted by the Labour Party to mark International Day of Disabled Persons.  Labour Leader Ed Miliband MP, Shadow Work and Pensions Minister Rachel Reeves and Shadow Disability Minister Kate Green will all be there and I hope we might expect something significant by way of clues as to Labour’s manifesto commitments on disabled people’s rights.

Here’s what I’d love to hear Ed say:

“The last Labour government came to power on a manifesto commitment to deliver full civil rights to disabled people.  We made major strides forward, putting in place disability equality legislation that is the envy of the world, reforming our outdated laws on mental capacity to ensure people can be the author of their own lives and reforming our public services to put more power into the hands of those requiring support to live independently and to be included in the community.  Alongside this we instituted reforms to our social security system to promote work for those who could and to protect vital security for those who could not work, tacking long term unemployment and low expectations.  We did not always get it right – as the ongoing situation of people with learning disabilities confined to institutions shows – and there remained much work to do, but our achievements enabled us to confidently ratify the United Nations Convention on the Rights of Persons with Disabilities in July 2009.

Sadly so much of those achievements have been undermined by the policies and decisions of the Conservative led government.   Key features of our equality law, such as the duty to involve disabled people or to assess the impact of policy proposals undone or undermined.  Cuts to to the very support that would enable more disabled people to participate and contribute socially and economically.  An abandonment of key programmes which had enjoyed cross party support such as the independent living strategy.  And welfare reforms without work replacing welfare to work.

The climate has changed; the deficit has not gone away; a Labour government will face difficult decisions about how to prioritise spending.  But we remain resolute in our commitment to the rights of disabled people to participate fully in our society as equal citizens.   And to these ends I pledge today that just as in 1997 a Labour government will on coming to power establish a new Disability Rights Task Force to advise us how we can begin to repair the damage done and move the disability rights agenda forwards.’

 

 

 

 

Who’s got the power?

Other people have dissected the Bubb report (Winterbourne View – Time to Change) in some detail today.  I’d recommend in particular the posts by Chris Hatton, Rob Grieg and Alex Fox for some reflections and thoughts on the future.  It’s also been heartening to see the priority accorded it by the television news channels, and congratulations to Kaliya Franklin and Gary Bourlet for ensuring coverage did not all gravitate towards policy wonks, charities and providers.

I want to offer two brief reflections:

First, after a shaky start both Stephen Bubb and his group and NHS England have I believe done a great deal to involve, engage and listen to people with learning disabilities, and key parts of today’s report are testimony to that.  CHANGE (where I am a trustee) are working hard to translate good words into action, in particular relating to the employment of people with learning disabilities in the NHS.  With NHS Employers CHANGE are working on a plan to be presented to the second ‘summit’ meeting with Norman Lamb, Simon Stevens and other senior bods in January.   We see employment as critical not just as an outcome in its own right, but as a way to transform institutions and their practices and are interested in particular in how employing people with learning disabilities in areas such as health promotion and commissioning could improve NHS performance.

Sadly, it does not always seem that the principle of involvement (nothing about us without us) guides the action and activities if others with a voice in this debate.   This is problematic on a number of fronts and now is I think time for some reflection on the part of all actors as to whether they practice what they preach.  As I pointed out in this blogpost, self-advocates have clearly defined community living not only as ‘being’ in the community, but as about choice, control and participation in the community.  It is therefore quite feasible to lend strong support to people not being confined to institutions yet still, through ones approach, to objectify people and deny them their right to voice and choice.  Surely for any organisation to enjoy credibility it has to model that which it claims to pursue in the world?   Fundamentally this is about consistently attending to questions of power – organisations that want a place in shaping the future need to be accountable to, in service to or led by people with learning disabilities and their chosen advocates.  Otherwise they themselves are part of the problem.

My second reflection also concerns power – the power that Ministers and central government either have or claim to have given away.  During various meetings I’ve attended at which Department for Health Ministers or senior NHS Officials, including Simon Stevens have been present what has been apparent is the degree to which accountability has been distributed across the NHS and beyond, to a point where no-one seems ultimately accountable, and no-one seems ultimately to be in charge. While not advocating that a dropped hospital bedpan should reverberate in Whitehall, what is obvious is that this fragmentation and devolution to the local does not in fact empower those with the least voice and that it is not improving outcomes for people with a learning disability.  If Ministers and senior officials have given power away, where has it all gone?

I’m slightly skeptical about this claim to powerlessness.  I certainly hope an outbreak of Ebola in the UK will not be met with the same claim to impotence.  However for now it seems the people with the supposed power are impotent, so why are we spending so much time on them?

So thinking about power, a charter of rights, plus a new ‘right to challenge’ are potentially welcome, but not if individuals and families are still left to battle alone or if it merely becomes a charter for lawyers.  We need to think about how to genuinely put power in the hands of individuals, families and their chosen advocates not simply to challenge decisions after the event on a case by case basis, but to genuinely affect the institutional change required at all levels of the NHS, local government and beyond.

This suggests to me a much deeper mode of involvement and accountability than anything so far seen – something we might look to in the promised white/green paper but which we need to come up with proposals around now. The work CHANGE are doing on employment is one important vehicle.  Another is Chris Hatton’s proposed ‘ninja taskforce’ hit squads – which would I hope themselves be a model of involvement, and which if properly empowered offer the chance of securing real change. Both are about involvement in problem solving, not simply listening exercises to tick a box.  It suggests also that we genuinely embrace and get over the problems with integrated personal budgets and do this within a framework of supported decision making to pass real power to individuals and their families.

It suggests that if those in charge have given power away, then the task and opportunity is to seek to grab it with both hands.

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Left versus right – a Hobson’s choice for disability rights?

The right is focused on negative liberty, the free market and individual responsibility, albeit sometimes expressed through collective social action.  It is supportive of the idea that disabled people who have the physical and mental capacity to do so should be able to exercise choice, control and freedom and not encounter direct discrimination, but unwilling to recognise and fulfil economic and social rights, to address accumulated or institutional disadvantage or to guarantee the support some require to achieve or exercise freedom.  It is suspicious (sometimes with good reason) that State support fosters dependency which it views as immoral.  Support from the State is largely compensatory, linked to the presumed effects and severity of impairment or health conditions, criteria about which are constantly redrawn and subject to ever more convoluted tests, not an investment related to addressing the barriers people face.  Responsibilities are imposed via conditionality regimes, not nurtured, yet often without the commensurate opportunities and support disabled people require to assume them.   Sanctions are harshly enforced.   Campaigners on the right emphasise overcoming dependency without recognising the support some disabled people require to participate and contribute.  This has the effect of characterising disabled people in receipt of any State support as dependent, underpinning and consolidating existing prejudices.  It – and the general withdrawal of State support to overcome dependency – renders those requiring support or facing barriers objects of charity, which often fails to respect rights to choice, control and freedom both in practice and in relation to how disabled people are characterised to raise funds and perceived by the wider public as a consequence.

The left is focused on economic and social rights, social solidarity and collective responsibility. It is supportive of the idea that disabled people should not face discrimination or disadvantage, including accumulated disadvantage.  However, it frequently lapses into a default setting of objectifying the intended beneficiaries of redistribution, especially disabled people, describing them ‘our most vulnerable citizens’ to secure public support for spending,  and neglects civil and political rights to self-determination and participation.  It often appears suspicious (sometimes with good reason) that giving individual choice and control is ‘neo-liberal’ agenda of privatisation by the back door, which it instinctively views as immoral.  Support from the State is mostly compensatory in nature, linked to the presumed effects and severity of impairments or health conditions, criteria about which are constantly redrawn and subject to ever more convoluted tests, not an investment related to addressing the barriers people face.   Responsibilities are imposed via conditionality regimes, not nurtured, yet often without the commensurate opportunities and effective support disabled people required to assume them.  Campaigners on the left emphasise the vulnerability of disabled people, calling on compassion and describing opponents and cruel and uncaring.   They often place the interests of ‘producers’ (public sector staff) over ‘consumers’ (disabled people requiring support to live independently) resisting the transfer of power to disabled people necessary to advance rights. Overall the left’s agenda and rhetoric sustains the idea that disability precipitates inevitable dependency on State welfare, underpinning and consolidating wider prejudices.

Are we capable of an agenda which frees itself of these problems?  An agenda which respects disabled people’s rights to self-determination, inclusion and participation, but which acknowledges, in the words of Arnardóttir and Quinn (2009), that:

‘In truth, all persons (whether disabled or not) depend on social supports at least at some point in their lives (especially when young or at the onset of old age) to make freedom and choice a reality. This underlying reality is simply more obvious in the case of persons with disabilities (though not for all of them). If one sought tangible proof of the interconnectedness of both sets of rights [i.e., civil and political, on the one hand, and economic, social and cultural, on the other] then disability is the obvious example. It is plainly not enough to enact anti-discrimination laws to break down arbitrary barriers. It is also necessary to assist people in getting past those barriers. The deeper paradox — one that obtains for all persons — is that personal freedom ultimately relies on social solidarity.’[1]

[1] Arnardóttir, O. M., & Quinn, G. (2009). The UN Convention on the rights of persons with disabilities: European and Scandinavian perspectives.

The difference between institutionalisation and independent living is the difference between abusing human rights and respecting them

I couldn’t decide what to say at today’s Housing and Support Alliance conference. I’d planned to share some thoughts about supported decision making, social networks and relationships and the importance of involvement, which I blogged about last week.

But in the end I didn’t.  

Since becoming a consultant in 2011 I’ve spent a lot of my time focused on disability rights in Europe and internationally.

When I began doing that I admit I probably had a somewhat elevated opinion of what we’d manage to achieve in the UK and what in time I’ve realised was a patronising view of other countries.

There are indeed horror stories.   I was recently told about a psychiatric institution in Asia where the patients – or perhaps more accurately inmates – are routinely shackled.  One woman was kept in a shed behind the main building.  She had been there for 20 years and never let out.  Food was passed under the door.  The shed had never been cleaned.

Yesterday I was at the EU Agency for Fundamental Rights to talk about de-institutionalisation and was reminded of the case of Rusi Stanev – a man with Schizophrenia who had been detained in a delapidated psychiatric institution in an isolated mountain area of Bulgaria for seven years.  His case went to the European Court of Human Rights.   The Court found a violation of Mr Stanev’s right to liberty as he was unable to challenge or seek compensation for his detention.  The Court also held unanimously that Mr. Stanev had been subjected to degrading treatment in violation of Article 3 of the ECHR by being forced to live for more than seven years in unsanitary and unlivable conditions and that domestic law did not provide him any remedy for such violations.  Reports by the Fundamental Rights Agency show that his situation was far from unusual – especially in Eastern Europe.

Countless countries have been criticised by various UN human rights treaty bodies, including the Human Rights Committee, the Committee Against Torture and the Committee on the Rights of Persons with Disabilities for their approach to people with mental health problems, learning disabilities or autism.   Their long term detention in psychiatric facilities or social care institutions has been classified as inhuman and degrading treatment as has the use of drugs, restraints and solitary confinement.

But in the UK we’re better than that aren’t we? No chance we’d face such criticism given all the progress we’ve made?

The reason I decided to change from what I had planned to say was having read the horrifying stories, reported in the Sunday Times (albeit after some considerable delay given one had been reported by the Care Quality Commission back in June), of Lisa and Stephanie via a series of gut wrenching and powerful blogposts from Sara Siobhan, Lucy Series and Chris Hatton.

Lisa lived for 9 years in solitary confinement, in a locked room at the ‘end of a male ward in a specialist learning disability inpatient service. All interactions with her were through a slot the size of a letterbox including her food being passed to her and her hair being brushed, with a beanbag for her to sleep on.

Stephanie was admitted to a specialist learning disability unit at the age of 18, where she lived in solitary confinement in a padded room with skylight windows for almost 7 years, during which time she gained over 10 stone.

Lisa eventually moved out; Stephanie died in the unit of sleep apnoea

We need to name this treatment for what it is: not poor quality care as though we were simply talking about a matter of customer service. Such experiences amount to the gravest of human rights violations – on a par with those in Africa or Eastern Europe in relation to disabled people.  Up there with some of the most serious human rights violations of any kind.

They both endured what has been referred to as a ‘civil death’ – having had all of their legal rights denied and rendered entirely invisible to the outside world. And of course in Stephanie’s case her life ended altogether while detained.

Doctors, clinicians, psychiatrists, commissioners and the staff in these institutions all must have contributed to perpetuating their situations.  We know from other stories that these are unlikely to be isolated cases.

They are the product of the same system and society which continues to institutionalise tens of thousands of people with intellectual disabilities and which leaves people otherwise isolated and in vulnerable situations in the community.

The difference between institutionalisation and independent living is not principally about where a person lives.  It is about the difference between abusing human rights and respecting them.

Our agenda has to be about how we ensure people enjoy liberty, the right to make decisions about their own life, to live free from violence, exploitation and abuse, to have privacy, the right to participate in all areas of community life, to have relationships and to start a family of their own.

Human rights must guide us and be the measure of our success.

To repeat the rallying cry of the 100 people with learning disabilities who met at CHANGE in Leeds earlier this year, this is about ‘voice, choice and FREEDOM!’

If we each really want to make a difference, we must come to think of ourselves and act as freedom fighters.

It’s time to unite, not to advocate more boundary changes

A quick reply to Sue Marsh’s important post earlier today.

People cannot exist, let along get on in life, while enduring grinding poverty. And one needs only look at levels of poverty and material deprivation among disabled people to recognise that in the UK and internationally the right to live life free of poverty is rarely realised.  People are absolutely right to oppose the reforms underway because they are not doing anything to alleviate or eradicate poverty.  The current programme of welfare reform is in fact making matters worse.  That – in my personal view – is not a matter for debate.

What is a matter for debate is setting out a viable alternative and how to win the political and public argument for it.   A few principles that I suspect – hope – we all agree on:

People with impairments and health conditions:

  • Have the right to be treated as agents in their own lives, not as objects
  • Have the right to realise their full potential, whatever that might be and however it might find expression, without encountering discrimination
  • Have the right to an adequate standard of living and to social protection
  • Should enjoy practical and financial support to realise these rights

These are rights that apply to all people with impairments or health conditions, irrespective of their impact on a person’s functioning (including illness),

So why should there be a debate about ‘sickness versus disability’ emerge? Not I don’t believe because of the analysis of the social model of disability – which does not and need not exclude an account of the impact of impairment of health conditions – or because of a focus on disabled people’s human rights.  Rather it is a product of welfare to work policy and its relentless focus upon individual responsibility and obligations to work rather than rights and opportunities.  It is that focus – and the need it creates to separate the ‘genuinely unable’ from the ‘malingerers’ – that necessitates a system which grades people by the ‘severity’ of their impairment or health condition.  And it has been the failure of that approach to be sensitized to the effects of particular impairments and health conditions that has placed obligations upon people inappropriately.

It is also a system (and a political and social context) which leaves people with little scope but to place emphasis on the impact of their impairment or health condition – on their lack of productive potential – for it is only this that is recognised and which is rewarded.  Saying this isn’t in denial of the impact of ill-health, nor is it designed to obscure it or in any way to criticise individuals.  Rather it is to highlight how it is in complete contrast with the human rights principles I outlined above. In our modern benefits system exhibiting agency or potential places people’s right to an adequate standard of living at risk through punitive sanctions regimes.  At the same time genuine opportunities and effective support are not forthcoming.

We may want to guard people against unfair and unreasonable expectations, but at what cost?

The conflict with the aims of disability rights emerges from the fact that continuing to define disability as a deficit for the purposes of benefit eligibility inevitably undermines the case for disability not to be legitimate grounds for discrimination and for people to enjoy control over their own lives.  This in turn undermines the case for investment in the supports which enable people to take control and participate.  Instead the compensatory, safety net welfare state which demands people enter a state of suspended animation to maintain their entitlement is sustained. The focus of public policy continues to be on redrawing the boundaries of entitlement under the pretence of identifying those who can and cannot work.  Trying to distinguish sickness in this context from disability is just more boundary changing.

Imagine instead an enabling State that focused on people’s rights and their potential and invested in it, no matter what that potential amounted to?  Imagine an enabling State that ensured everyone had a decent standard of living and which removed barriers and secured the support people needed to get on in life.  That’s always been the dream of disability rights activists when talking about independent living  – that public resources were used not to simply sustain them, but to invest in them.

But we also need to imagine and make real an agenda that recognises and seeks to respond to the diversity of experience, understanding that removing barriers for some doesn’t remove barriers for all.  That of course includes people experience the effects of ill-health, but it also includes others who have often been left behind such as people with learning disabilities or mental health problems for example.   In seeking to avoid discussion of impairment or ill-health, some disability activists have helped foster huge inequalities between different disabled people – in some cases greater than those between disabled people as a whole and non disabled people.

Isn’t fixing this something everyone can rally around?  Because if it isn’t then I fear that welfare activism and disability rights activism are going to continue to be in a conflict that neither ultimately desire or from which no-one will ultimately benefit.

Beware the ‘soft bigotry of low expectations’

The soft bigotry of low expectations limits what we can achieve’ - Graeme Innes, ex-Disability Rights Commissioner, Australian Human Rights Commission

It’s important I think to recall that Lord Freud’s comments – that the proposal to ‘top up’ wages paid below the minimum wage to people with learning disabilities through the benefits system was something he would give consideration to – were set in the context of his thinking how to secure more employment opportunities for people with a learning disability.

What is it that offends us about this idea so much?  This government and the last have subsidised the costs of employing various groups who are vulnerable to labour market disadvantage in schemes such as the Future Jobs Fund for the long term unemployed and wage incentives to take on young people.  They have done so because employers would otherwise hire elsewhere.  In short, because employers regard the long term unemployed and young people as worth less to them than those with ready experience.   Further, the system of tax credits has sought to mitigate the impact of low wages on in- work poverty.

However, in such schemes people receive in their pocket from their employer at least the minimum wage. That is, the very minimum we as a society believe all people’s labour is worth. Moreover, the State subsidy involved is commonly regarded as a positive investment both in the development of the people concerned – in recognising their potential and enhancing their future ‘worth’ to employers – and in the economy. 

Therein lies the fundamental difference with what Freud was prepared to contemplate with respect to supporting people with a learning disability into work.  Freud’s starting point did not appear to be one of seeking to address the lack of opportunities people with learning disabilities have had to realise their potential, to acquire skills and experience and to tackle the prejudice that underscores employers unwillingness to hire – let us not lose sight of the fact that 79% of people with a learning disability have never been in paid employment. Rather it was to concur with the idea that people by virtue of their impairment alone are intrinsically worth so much less to employers and that unlike other groups are not amenable to initiatives aimed at enhancing their skills, experience and employment prospects.  Further, Freud indicated a preparedness to give institutional legitimacy to such prejudices through making up the shortfall in wages via the benefits system – that is, by using public resources to compensate the individuals concerned for their unequal pay, not to invest in their futures through the kinds of subsidies mentioned above.

This is a further example of what Abina Parshad-Griffin once described to me as ‘malevolent benevolence’ – prejudice masquerading as kindness or which Graeme Innes recently described as the ‘soft bigotry of low expectations’ which plagues the lives of people with learning disabilities (and disabled people generally) and which underscores the widespread discrimination many encounter in all areas of our society.

The task of tackling such deeply ingrained inequality is multifaceted and complex.  It is positive and welcome that the government should be looking at ways to improve the employment prospects of people with a learning disability.  Employment is for many a route to social inclusion and well-being.  More people with learning disabilities visibly occupying job roles and interacting with their colleagues is a key way to eliminate prejudice and stereotypes. And the more people with a learning disability are in paid employment, paying taxes and relying less on social security, the more that the savings can be re-invested in opening up life opportunities for others.

But our efforts will be thwarted if Ministers in charge perpetuate – unwittingly or otherwise – the very same prejudices and low expectations that stand in our way.  The success of all strategies to support people with a learning disability into employment pivot on one essential ingredient: high expectations.

The Elephant Trap in the Room Part 2

So the fury at Freud rolls on, and no wonder.  Whatever his intent – that more people with ,mental health problems or learning disabilities (brigaded under the heading ‘mentally damaged’ by the questioner) should have the opportunity of work – his simple statement that such people are ‘not worth’ the minimum wage will, to quote Esther McVey, haunt him.  I hope he goes, not just because of this but because he’s responsible for bad policy, which has failed disabled people and wasted £billions of taxpayers money.  He was hired originally, I understand, to assist Tony Blair and John Hutton to win the case for DWP to spend money the Treasury under Gordon Brown refused to commit to employment support.  His answer was ‘payment by results’ facilitated by the ‘ame-del switch.’   This extract from a Work and Pensions Committee Inquiry into the Work Programme provides details. The problem is that the projected savings are not being realised, which in turn appears to be pushing DWP towards ever more draconian sanctions regimes, deterrents and the demonisation of claimants.

But……. let’s contrast what underlay Freud’s comments with what various welfare reform opponents have advocated recently, and indeed an idea that was proposed by the Shadow Disability Minister Kate Green MP last week.

Here’s the transcript of the question asked and Freud’s response:

Questioner: “The other area I’m really concerned about is obviously the disabled. I have a number of mentally damaged individuals, who to be quite frank aren’t worth the Minimum Wage, but want to work. And we have been trying to support them in work, but you can’t find people who are willing to pay the Minimum Wage.

“We had a young man who was keen to do gardening; now the only way we managed to get him to work was actually setting up a company for him, because as a director in a company we didn’t have to pay the Minimum Wage, we could actually give him the earnings from that. But trying to actually maintain his support and allow him to actually work-which he  wanted to do–so to actually stay with benefits, and stay with some way of actually managing to continue on in that way. And I think yes, those are marginal areas but they are critical of actually keeping people who want to work supported in that process. And it’s how do you deal with those sort of cases?”

David Freud: “…You make a really good point about the disabled. Now I had not thought through, and we have not got a system for, you know, kind of going below the Minimum Wage.

“But we do have… You know, Universal Credit is really useful for people with the fluctuating conditions who can do some work – go up and down – because they can earn and get…and get, you know, bolstered through Universal Credit, and they can move that amount up and down.

“Now, there is a small…there is a group, and I know exactly who you mean, where actually as you say they’re not worth the full wage and actually I’m going to go and think about that particular issue, whether there is something we can do nationally, and without distorting the whole thing, which actually if someone wants to work for £2 an hour, and it’s working can we actually…”

Terrible eh?   Here’s what Carers Watch and Pats Petition wrote this year, under the heading ‘We need to talk about the elephant in the room’:

‘The real world out there is a competitive labour market. Employers hire the candidate who convinces them that they will be the most productive and stand up to the most pressure. The candidate who is the fittest, gets the job. That’s the real world of getting a job.

But what should an employer do when they are asked to take on a disabled person whose impairments will bring extra costs to the employer? No-one even asks the question. It’s the elephant in the room that no-one talks about. They’ll talk about reasonable adjustments and enabling people to overcome the barriers to being productive, but can that work for everyone?

 Until we start asking these questions, we won’t find the solution. Governments intervene in markets all the time to promote equality: but apparently not for disabled people.’

Hmmm, so David Freud talks about the apparently same ‘elephant in the room’ in response to a question at a Party Conference fringe session, and is roundly attacked, including by…. Pats Petition.   Now of course, Pats Petition and Carers Watch have not advocated that disabled people should be paid less than the minimum wage when in work.   But the view they do appear to share is the idea that some disabled people are intrinsically less competitive and less likely to be hired by employers and that a level playing field cannot realistically be created through reasonable adjustments or supports alone.

Being a free marketeer, Freud links productivity to pay and presented with the idea that paying people beneath the minimum wage might be a way to secure jobs for people who he believes employers legitimately don’t regard as worth employing says he will go away and look at it, with a view to Universal Credit making up the shortfall.

Carers Watch and Pats Petition have suggested:

‘Because someone is less competitive it doesn’t mean they can’t work and contribute and there are still lots of options that might help them. Quotas, subsidies, campaigns, lots of opportunities for permitted and voluntary work. The government could intervene in the job market to make it a level playing field. Perhaps this needs a name – Supported Work.’  

Presumably then Carers Watch and Pats Petition would countenance the idea of subsidising the costs of employing a ‘less competitive’ disabled person.  But no matter how much less competitive a person is, they maintain that their labour should never be judged as worth less than the minimum hourly wage.

The problem with what both Carers Watch/Pats Petition’s suggestion and David Freud’s proposition (and an idea being considered by Labour -see below) share is an essentialist view of the impact of impairments and health conditions on a person’s competitiveness.  One does not need to be in denial of the functional limitations imposed by impairments and health conditions to understand that productivity or competitiveness are – for all people – highly contextual and influenced by a huge range of factors.   Yet this essentialist approach to the impact of a persons impairment on their productivity is finding voice elsewhere.  The proposals of ‘The New Approach‘ include some important ideas about taking a more flexible and rounded approach to identifying the factors influencing a persons work prospects and the support they may require, common with the proposals of the Poverty and Disability Taskforce established by the Labour Party.  But it goes on to propose that a person’s ‘reduced capability for work’ be expressed as percentage ‘limitation’,  that the person be given a ‘statement of support needs’ setting out that percentage and that ‘an employer has to make an adjustment for (the persons) limitation.’   Labour appear to be considering something very similar to this idea.

Employers do not make adjustments for the ‘limitations’ imposed by an impairment or health condition.  They make adjustments to remove the barriers that would otherwise amount to discrimination by preventing a person capable of doing a particular job from doing it.  As with the question of productivity and competitiveness, such barriers are specific to particular job roles, employers and individuals – they cannot be generalised.

In seeming to appropriate the idea of a statement of some kind. Labour appear to have forgotten why in the The Equality Act 2010 they prohibited employers from using pre-employment health questionnaires. Evidence showed that such questionnaires were used during recruitment processes to screen out disabled applicants.  Perhaps the ‘Statement of Support’ would only be passed to an employer once a job offer has been made, but the idea that disabled people’s job prospects will be aided by official advice saying that they have only 25% ‘unlimited’ capability to work strikes me as naive at best. How on earth could a person hope to bring a claim of discrimination by an employer when the government says they are officially less capable/productive than their peers?

As the World Report on Disability said: People’s capabilities depend on external conditions that can be modified by govern­ment action….the capabilities of people with disabilities can be expanded; their well-being, agency, and freedom improved; and their human rights realized’

Employers – and disabled people – can be supported to get in, get on and stay in work. The Access to Work Scheme (properly functioning) can be transformative and moreover has proven return on investment.  The State could do far more, by using existing resources more intelligently, as Liz Sayce and I set out in the report ‘Taking Control of Employment Support’ which proposed that the Work Programme and Work Choice be dissolved and the money put in the hands of disabled people and employers to commission the support and adjustments they identify are necessary.  The wider framework of public policy and services – from education, to health and social care, to public transportation – needs to be reformed to help create the opportunity infrastructure than optimises the chance of disabled people getting jobs and enjoying satisfying working lives.  Equality law needs to be robustly enforced and people should enjoy accessible modes of redress where they have faced discrimination.  The world of work itself is changing and can be changed further to include more people working in different ways, in different places, for different amounts of time.  The Welfare State should be reformed to under-write people making whatever contribution they are able to.

All these things must be tried before we judge anyone to be intrinsically incapable of work.  At the same time disabled people should not face sanctions and loss of income until such time as it is proven that they enjoy genuine equality in the labour market. And we should never, ever, consider paying anyone less than the minimum wage.

We need to bring human rights to the small places, close to home

“We circle around sacred values and then share post hoc arguments about why we are so right and they are so wrong.  We think that the other side is blind to truth, reason, science and common sense but in fact everyone goes blind when talking about their sacred objects.  If you want to understand another group, follow their sacredness

Jonathan Haidt, The Righteous Mind – why good people are divided by politics and religion (2012)

Public attitudes are capable of nourishing or destroying laws and institutions.  In the UK public attitudes are helping to destroy human rights, both within and beyond our shores.  The UK is not alone – the human rights ‘brand’ is under assault across the globe, whether in attitudes to the International Criminal Court in parts of Africa or perceived tensions between civil liberties and security in the post 9/11 USA for example.

The Human Rights Act 1998 may have ‘Brought Rights Home’ by ‘repatriating’ the rights contained in the European Convention on Human Rights, grounded as many of them were in the English Common Law, but I think it is fair to say that implementation has struggled overcome the dangers identified by Eleanor Roosevelt on the occasion of the coming into force of the Universal Declaration on Human Rights:

‘Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere.’

It is ironic that the lack of meaning that human rights appear to possess for many people in the UK stems in no small part from the UK’s record of success in embedding respect for human rights and fundamental freedoms.  For most people such rights and freedoms are so woven into the everyday fabric as to be invisible.  International human rights funders do not on the whole support human rights work in the UK because of this, seeing the real threats as lying elsewhere.   International human rights NGOs do not carry out work in the UK for the same reason.  The UK is one of the ‘good guys’ that respects and complies with international standards and the rule of law.  Our Foreign and Commonwealth Office actively promote human rights around the globe.

Of course the Human Rights Act and the European Convention on Human Rights have benefited ordinary citizens seeking justice.   Yet somehow, when stories such as families securing justice for the loss of loved ones at the hands of the State, as in the case of the Hillsborough Inquests or by the families of those who died in NHS hospitals in Mid Staffordshire or ordinary law abiding people challenging the abuse of investigatory powers by snooping local councils reach the public domain, the pivotal role of the Human Rights Act or the European Court of Human Rights appears to get lost.

And while countless groups and organisations are actively involved in campaigning for what in many other countries would be characterised as human rights – the campaign for LGBT equality, for disabled people to live independently, against violence against women, for equal pay, against institutional racism – in the UK many of these groups choose not to frame their advocacy in these terms, being more likely to talk of equality, social justice or civil rights.   Sometimes in the past such organisations have expressed outright hostility to human rights, regarding them as overly legal and as atomistic, divorced from social movements and at odds with group solidarity.   Today many appear hesitant to employ human rights precisely because it has become such a toxic brand.  Some fear it will switch off donors, politicians and the media and do more harm than good.

Yet it is precisely this ‘hidden army’ of human rights defenders that need to out themselves if we are to begin to change the narrative on human rights in the UK and to build support for the importance of human rights in the ‘small places close to home.’ We do have a publicly funded institution with a legal duty to do such work, but for seven years now (including the time I worked there, leading its human rights work) it has mostly resisted doing so.  Help is out there however from the Equally Ours initiative, established by the Equality and Diversity Forum with the support of eight charities, for them to be able to tell their story of human rights in a way that not only avoids the toxicity but which is shown to enhance the impact of their advocacy work.

Unless and until this broader constituency of support comes forward to tell its own human rights stories, the human rights narrative in the UK will continue to be dominated by stories about alleged terrorists, asylum seekers, foreign criminals, prisoners, travelers (INSERT UNPOPULAR GROUP HERE), using the Human Rights Act or bringing cases to the European Court of Human Rights to – it is argued – evade justice, or to violate unwritten codes of fairness by expecting rights without exercising commensurate responsibilities.  In short, human rights will continue to be regarded as anti-majoritarian – as in the interests of minorities only and not the wider public interest.  This narrative will leave it wide open to abuse – ironically underpinning a narrative that fosters in many a sense of powerlessness and disenfranchisement, when the very purpose of human rights is to accord power to the people and make the powerful accountable.  That is why attacking the Human Rights Act and the European Court of Human Rights is so central to the increasingly successful narrative of the UK Independence Party, despite the fact that the Party’s policies if enacted would render people more powerless still.

Promoting factual accuracy in the reporting of the stories that create what PR people call the ‘washing line’ for this negative narrative is an important nut to crack and something which is not yet being done systematically.  But ultimately the fact that the European Court of Human Rights did not say that all prisoners must have the right to vote or that it did not demand that UK courts could not impose Whole Life Tariffs for serious crimes, only that those subject to life sentences should have a right to a review is unlikely to go far in changing the narrative.   To comply with the judgments on prisoners votes some prisoners will have to be given the right to vote.  And if a right of review never holds the prospect of a prisoner serving a life sentence being released well then why have a right of review?   The detail is too complex and subtle to address and challenge people’s intuitive sense that such judgments are at odds with their values.  Building support for human rights should not be confused with challenging people’s prejudices.  It is about finding the messages that work with their values.  And as the American expert on framing Professor George Lakoff warns ‘negating a frame re-enforces the frame.’ That is to say, each time we try to correct the way these cases are presented we help those who are using them to build antipathy towards human rights by assisting them to frame the discourse.  We simply confirm their claim that human rights is primarily about prisoners, terrorists and criminals.  While ensuring that accurate information is available is critical, our larger strategy has to pivot away from these stories and we must create our own frames and narratives that speak to rather than conflict with common values.

That is why much of the response to the Tories recent ‘proposals’ this past week has been so unhelpful.   The paper may be ‘legally illiterate,’ its proposals completely unworkable. But that’s not the point at all. Both politically and as a piece of political communications it is a work of art.  The Tories, outflanked by UKIP in the European elections, enduring defections and facing damaging defeats in by-elections ahead of next year’s General Election, unable and unwilling to promise unilateral withdrawal from the European Union have offered up Britain’s support for the European Court and Convention on Human Rights as a sacrifice.  And the joyous front page headlines of the right wing press show clearly that the strategy has worked, helping take some of the shine off Nigel Farage’s defections bonanza ahead of today’s by-election in Clacton-on-Sea.  Moreover, ‘out of touch left wing human rights QCs’ bickering about its legal accuracy on social media and elsewhere is most likely serving rather than undermining its impact – the Tories are able to point out how they are giving the hated fat cat human rights lawyers a kicking as well as getting Europe off our lawn: as turkey’s voting against Christmas.  In fact the only response that got anywhere near undermining the proposals in my view was that of the Daily Mash which ran the headline ‘Human rights laws to be replaced by gut instinct’

Think politicians and the media just don’t get the difference between the EU and the Council of Europe? Think again – the confusion is deliberate and calculated.  Public antipathy towards human rights is rooted in the same existential fears and xenophobia that underpins attitudes towards immigration.  Both attitudes to immigration and to human rights have become weapons in the battle to leave the European Union.  So long as human rights are primarily associated with negative themes it will continue to serve this purpose. The battle over Europe is going to dominate the political landscape before the election and very likely beyond, especially if David Cameron wins an outright majority or enters into a further coalition at the 2015 General Election.  Post-election should the prospect of an in/out EU referendum become real, hostility to human rights and the threat or reality of regressive reforms will go up several notches still.

The only way forward for human rights advocates is then a concerted detoxification strategy.   Different frames, different messages, different stories, different people telling their stories.  It requires people to understand and to focus on speaking to people’s existing value systems, not on seeking to impose value systems. It requires coordination and discipline. It requires everyday people and organisations that the public recognise and trust and who care about human rights from all walks of life to speak out about why human rights matter to them, why they should matter to others and why human rights matter for Britain.   To finish with the remainder of Eleanor Roosevelt’s famous quote:

‘Without concerted citizen action to uphold human rights close to home, we shall look in vain for progress in the larger world.”

The time has come for all human rights defenders to come out, stand up and be counted.

The campaign for authentic love and the right to sleep starts here….

Another brilliant blog post from Mark Neary today on the right to sleep, not to minor respite from extreme and persistent exhaustion.    Imagine if you will, those of you who are parents, that the sleep patterns of the first few weeks of your child’s life continued in perpetuity.  That’s a reality for many people supporting family members in Britain.

As usual Mark’s personal accounts expose the dishonest, patronising and frankly abusive bullshit not just of national and local government and our politicians, but of many charities who profess to exist to advance the interests of disabled people and their families.

Informal care-giving is over celebrated and massively unsustainably over-relied on.  Yet so twisted has the public narrative around care become that those allegedly standing up for ‘family carers’ frame common experiences such as a level of sleep deprivation that would shame the interrogators at CIA blackspots, people being unable to hold down their job and living in poverty as a consequence, people suffering isolation, stress and depression, family breakdown, child labour and a situation putting not only those providing support but those receiving it at risk not as a national scandal, but as a heroic, irreplaceable £119 Billion ‘saving’ to the State.  One charity’s big answer to this is to encourage ‘carers’ to make sure they have a good breakfast…

Without a change in the narrative, this over-reliance is set only to become greater.   Public spending cuts are squeezing services while demand is growing exponentially, due both to our ageing society and increasing numbers of disabled people with so called ‘complex needs’ reaching adulthood.   Who or what is going to fill this ever yawning gap?

Our starting point has, I believe, to be an abandonment of the ‘carers’ & ‘cared for’ labels.  We need instead to talk about and focus on people’s right to good, authentic and sustainable relationships as a matter of equality and human rights.    My thinking here is influenced by a piece I read by the Swedish Historian Lars Tragardh regarding the ethic underpinning the Swedish Welfare State:

‘…authentic human relationships are possible only between autonomous and equal individuals. in Sweden this ethos informs society as a whole. Despite its traditional image as a collectivist social democracy, comparative data from the World Values Survey suggests that Sweden is the most individualistic society in the world. Individual taxation of spouses has promoted female labour participation; universal daycare makes it possible for all parents – read women – to work; student loans are offered to everyone without means-testing; a strong emphasis on children’s rights have given children a more independent status; the elderly do not depend on the goodwill of children.’

British public policy it could be argued relies upon inauthentic human relationships.  That is not to say people in relationships of support would not otherwise be in these relationships at all, but rather that the nature and scope of the relationships they are in are not ones they would choose, imposing both dependency and burden, undermining the self-determination and well-being of all affected, however much people love one another.

A common objective should then be to dismiss the labels of ‘carers’ and ‘cared for’ and the false metaphors of the good Samaritan and burdensome dependent that these titles invoke.    People in relationships of support and their advocate organisations have a common interest in coming together to campaign for the right to a good, authentic family life – the right to be husbands and wives, parents and children, partners, sons and daughters, brothers and sisters….Public resources should be marshaled in support of nurturing and sustaining (not replacing, or subverting) these natural relationships.

Until that happens there will continue to be many more sleepless nights.