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.

On disability hate crime we need a strategy for prevention

Good, albeit depressing, to hear BBC 5 Live devote an hour to disability hate crime, with ex Director of Public Prosecutions, Sir Ken McDonald, essentially repeating messages about institutional failure in the criminal justice system that he first made in a speech in 2008.

There has been steady, albeit uneven, progress on recording of disability hate crime by the police since then (often misreported as an increase in the incidence of disability hate crime itself).   But there continues to exist a yawning gap between estimated incidence of such crime (at around 72000 per year) and that reported to/recorded by the police with only around 2.5% (1841) of all incidents recorded in 2012-13.  Of these, less than 1% were prosecuted.

Increasing the levels of reporting, recording and prosecution must therefore remain a central objective in the battle against the hostility encountered by disabled people.  But to rather subvert the title of Katherine Quarmby’s book on the topic of disability hate crime, there is a risk that by only focusing on criminal justice, other institutions and wider society can scapegoat the police and Crown Prosecution Service.  Such hostility may sometimes amount to a criminal matter, but its roots are deeply embedded in prejudices which can be found in all areas and at all levels of society.  The vast majority of this will not be uprooted by the actions of the police and prosecutors who are, after all, dealing with symptoms, not the causes (though as Katherine Quarmby rightly points out, we are still in the dark as to what the motivations of those who commit such crimes actually are due to lack of research).

To these ends a much under-utilised legal tool is s149 (5) of the Equality Act 2010 – the section of the Public Sector Equality Duty which requires public authorities to have ‘due regard to the need to foster good relations between persons who share a relevant protected characteristic and persons who do not share it involves having due regard, in particular, to the need to— (a) tackle prejudice, and (b)promote understanding.’

The Public Sector Equality Duty replaced the Disability Equality Duty (DED) which contained an explicit duty on all public bodies to ‘eliminate harassment’ and to ‘promote positive attitudes towards disabled people.’  During the Equality Act’s progress through Parliament, assurances were given that the new ‘good relations’ duty should have the same effect as the previous strands of the DED and that in particular ‘tackling prejudice’ should be regarded as tackling its manifestations including hostility and harassment. Indeed, the Explanatory Notes include the following example to explain what the duty might entail ‘The duty could lead a school to review its anti-bullying strategy to ensure that it addresses the issue of homophobic bullying, with the aim of fostering good relations, and in particular tackling prejudice against gay and lesbian people.’

The DED was the reason the EHRC’s inquiry into the issues focused on ‘disability related harassment’ rather than ‘disability hate crime’ – the duty has a far broader and deeper application than s146 of the Criminal Justice Act, and while encompassing the police and prosecutors, it also applies to government departments such as the DWP, local councils, educational establishments, regulators of the media and others.

The criminal justice system must not be let of the hook.  But if we are serious about giving people the freedom of a more safe and secure life, then a strategy focusing on preventing hostility and tackling prejudice towards disabled people, underpinned by s149 of the Equality Act 2010, is what’s urgently required.

It’s like déjà vu all over again

Fascinating to find such contemporary relevance in an account of the exchange between the Union of the Physically Handicapped Against Segregation (UPIAS) and the then newly minted Disability Alliance from 1975, with the latter standing accused by the former of undermining inclusion by focusing too narrowly on benefits income.    I’ve copy and pasted some key extracts below but for those with an hour to spare you can read the full, seminal document here

Interestingly the position of UPIAS is to advocate for what might now be termed welfare to work and strongly against anything which fostered dependency among disabled people on ‘State Charity':

‘”Benefits” which are not carefully related to the struggle for integrated employment and active social participation will constantly be used to justify our dependence and exclusion from the mainstream of life the very opposite of what is intended. This is why the Alliance’s appeal to the state for legislation to implement a comprehensive, national disability incomes scheme is in reality nothing so much as a programme to obtain and maintain In perpetuity the historical dependence of physically impaired people on charity. It does not even have the merit of revealing to the public it wishes to educate that its incomes policy is really a form of State Charity that is, help which essentially entrenches our dependence on the state instead of encouraging our independence and active participation in the mainstream of life. The Alliance’s appeal to the public on our behalf is still the same old appeal to pity, the begging bowl in modern form. A hundred years ago such an appeal for state rather than personal or voluntary charity might have made some sense. But today, when technological and social changes have radically altered the possibilities for us to take independent control over our own lives, to continue to stress our incapacity and helplessness is to bind us with more chains instead of emancipating us. What we really need is to be helped to make our maximum active. contribution to society as full members.’

And UPIAS go onto warn how any assessment process based around the degree of impairment actively encourages disabled people to play down their abilities and to become more dependent:

‘…..we find that by also ignoring the social cause of disability, and therefore the need to bring about integrative social change, the Alliance encourages us to see our oppression as a matter for detailed negotiation. Their narrow proposals immediately create for us a vested financial interest in claiming what becomes our main asset “disability”. In addition, since the amount of charity will be determined by the degrees of disability, physically impaired people will also have a vested interest in playing down our abilities. The best financial contribution we could make to our families would be to become, or pretend to become, more dependent.’

UPIAS foresaw that this would place the State in conflict with disabled people over the determinants of who is or is not eligible for ‘handouts':

‘The State, of course, will automatically be in conflict with us for it will seek to limit its handouts, otherwise there would be no one at work. State Charity, therefore, creates a conflict of interests between the State and its social administrators on the one hand and physically’ impaired people on the other. Thus the Alliance logically sees the need to establish objective criteria which would enable the State’s social administrators to determine the “degree of disability” and to exclude the malingerers from benefit. A whole new generation of researchers and testers will be created to administer the incomes policy of the Alliance. ‘

Moreover, UPIAS correctly predicted the age of Atos:

‘The scene facing every physically impaired person, then, is of an army of “experts” sitting on panels which are set up all over the country. These “experts”, armed with the latest definitions and tests for measuring, will prod and probe into the intimate details of our lives. They will bear down on us with batteries of questions, and wielding their tape measures will attempt to tie down the last remaining vestige of our privacy and dignity as human beings. To calculate the “degree of disability” they will be forced to snoop and spy. How else could they decide whether a physically impaired person dresses her/himself, for example, or is helped? Just to test this simple act would require considerable investigation to make sure the person was not “malingering” (or, what would inevitably be the new jargon, “dress-lazy”). It should take physically impaired people little imagination to see where all this leads. Every single act would have to be performed in front of a panel while they measure and pry. Already the details are being worked out, the definitions constructed, criticised and reconstructed. The hated means-testing would seem like a formula for privacy compared to the Alliance’s proposals for assessing “degree of disability”.’

And UPIAS also correctly identified the impact that this could have on the status and psychology of disabled people:

‘Thus in practice the Alliance’s assessment plans, developed logically from the narrow incomes approach, can be seen to increase the isolation and oppression of physically impaired people. We would be required to sit alone under observation on one side of the table, while facing us on the other side, social administrators would sit together in panels. We would be passive, nervous, deferential, careful not to upset the panel: in short, showing all the psychological attributes commonly associated with disability’

Of course in the intervening period came developments such as Disability Living Allowance, the Direct Payments Act, the Disability Discrimination Act, the Equality Act and so on, each of which made some inroads into developing the framework for inclusion that UPIAS advocated.  Yet fundamentally it seems that, 40 years on, much of UPIAS warned against has come to be, entrenching rather than overcoming dependency.

Reform of the benefits system followed the Disability Alliance path, not the UPIAS one.  And today, mired in austerity, the political and philosophical division between those focused on income security and those pursuing inclusion is, sadly, alive and well.   

Is it time to revisit the discussion?

Why campaigning for the right to work and employment should be a priority

The welfare reform debate is confined to a single question: which Party can make it most difficult to get onto and stay on social security benefits.   And because successive governments have struggled to develop programmes which genuinely help people into employment, the focus of welfare reform has increasingly become one of making access to social security as frustratingly complex and insecure as possible and of managing individual behaviours within a scheme of required activities and punitive sanctions for non-compliance, such that people who fail can have their benefits justifiably cut.   So toxic is the debate surrounding welfare reform that anything which deflects from this core goal merely bounces off, attacked as celebrating a ‘something for nothing culture.’   There is simply no space for alternative ideas to breathe.

This is why welfare reform does not then offer a viable political or practical vehicle through which to anticipate improving the living standards of disabled people and people with long term health conditions in the immediate term.  Sure, defending against further regressive cuts may be important, but focusing all campaigning efforts on the benefits system is a strategic and tactical mistake.  Not only is doing so largely futile in this political environment, it also ignores where the real opportunity to improve living standards and opportunities lies.  We need to campaign outside of this space.

The strange thing about the years since the financial crash of 2008 is that unemployment didn’t rise to anything like the levels of previous economic downturns.  Disabled people’s employment was not disproportionately affected by the downturn either.  And now employment is growing as the economy begins to recover.  Disabled people and people with long term health conditions should benefit from this recovery.  This is why if campaigners genuinely want to tackle poverty and ensure an adequate standard of living for disabled people and people with long term health conditions they will use the occasion of the 20th anniversary of the Disability Discrimination Act next year to launch a major campaign on the right to work and employment

‘But…..’ I can already hear people saying ‘….what of those who cannot work?’  Well, bear with me and I will explain why my proposal is designed genuinely to ensure ‘work for those who can, security for those who cannot.’

The right to work and employment is entirely different to an obligation to engage in ‘work focused activity’ as a condition of receiving benefits.   Campaigning for people to have opportunities for work and employment is not the same as campaigning for people to be made to do work.   A focus on the right to work and employment places the emphasis on addressing the factors which deny people opportunities to do so, like the availability of suitable jobs, discrimination, access to education and training and critically the nature of work itself and how accommodating this can be to people requiring atypical working arrangements.  

The opportunity here is not only to pinpoint these barriers and to generate new momentum to secure their removal, but in doing so to also expose the distance which continues to exist between many people and a real prospect of sustainable employment.   This in turn offers the prospect of exposing the blunt ineffectiveness of the Work Capability Assessment, the uselessness of the Work Programme and the unreasonableness of the increasingly punitive conditions and sanctions faced by those who are excluded from the labour market through no fault of their own.  It allows us to demonstrate that unemployment is not a matter of individual failure, but of systemic failure.  Yet unlike many recent campaigns against welfare reform, the price of doing so need not be the deliberate lowering of expectations or of disability activists appearing to turn their backs on rights and equality.   

This is why a campaign for employment and work – entirely removed from the toxicity of welfare reform – holds the prospect of promoting both opportunity and security.  Any takers?

If there is an Inquiry by the UN Committee on the Rights of Persons with Disabilities concerning the UK…

Updated 7th October 2014

There’s been lots of back and forth on Twitter and elsewhere regarding the rumoured Inquiry by the UN Disability Rights Committee into the UK, and in particular the confidentiality of the Inquiry procedure.

First of all, an ex Committee member Gabor Gambos announced that there was to be an Inquiry when speaking at the National University of Ireland in Galway School of Disability Law and Policy Summer School back in June.  He did not say what the Inquiry was about, only that had been launched.  The Secretariat of the UN Committee will not confirm or deny the Inquiry because it considers itself to be subject to confidentiality and presumably that confidentiality extends even to the question of whether or not an inquiry is taking place at all.  So there is no official notice that an Inquiry is taking place and no information at all in the public domain about what triggered it and and what it is to focus on.

If an Inquiry has been launched it will have been done so in accordance with Article 6 of the UNCRPD Optional Protocol.  Article 6 says that:

1. If the Committee receives reliable information indicating grave or systematic violations by a State Party of rights set forth in the Convention, the Committee shall invite that State Party to cooperate in the examination of the information and to this end submit observations with regard to the information concerned.
2. Taking into account any observations that may have been submitted by the State Party concerned as well as any other reliable information available to it, the Committee may designate one or more of its members to conduct an inquiry and to report urgently to the Committee. Where warranted and with the consent of the State Party, the inquiry may include a visit to its territory.
3. After examining the findings of such an inquiry, the Committee shall transmit these findings to the State Party concerned together with any comments and recommendations.
4. The State Party concerned shall, within six months of receiving the findings, comments and recommendations transmitted by the Committee, submit its observations to the Committee.
5. Such an inquiry shall be conducted confidentially and the cooperation of the State Party shall be sought at all stages of the proceedings.

The Optional Protocol under the UNCRPD is the same as that under the UN Convention on the Elimination of All forms of Discrimination Against Women (the only other Optional Protocol that the UK has ratified).  In relation to the UNCEDAW Optional Protocol, it has been suggested that the confidentiality rule applies only to the Committee and not to NGOs who have called for an inquiry.  However, for this to have any relevance to the rumoured CRPD inquiry into the UK it would demand that NGOs had been advised officially of an inquiry and of its focus.

It has also been suggested that ‘At the end of the six-month period upon which the State party has submitted information on the measures taken in response to the CEDAW Committee’s recommendations, the confidential part of the process has ended and the CEDAW Committee may publicize the situation and the inquiry, including the CEDAW Committee’s Report and Recommendations and the State Party’s Response.’  Indeed, the CEDAW Committee did so following an Inquiry concerning Mexico. Those interested in this inquiry and its perceived strengths and weaknesses may wish to read this interesting article. On this basis, if an inquiry has been launched we should anticipate seeing the findings of the Committee and the government’s response and any steps it has agreed to take once the Inquiry process is completed.

So, it would appear that an NGO or individual that is in a position and willing to reveal the existence and focus of an inquiry is entitled to do so as they are not the object of the confidentiality requirements.   If nobody is in a position or willing to then anything else is merely idle speculation and any ‘joining the dots’ should be regarded with caution.

Ultimately this is a political and tactical decision for whoever it may concern.  While some may believe openness and transparency should trump all else, I would merely point out that in this febrile environment a less public process may yield far better long term results than a big hoo ha about the fact that an inquiry – the findings of which could be that no violations have taken place – may have been launched.

Many disabled people have wanted the UN to engage with policy developments in the UK. They may have succeeded if the Committee has launched an inquiry into relevant topics. I share people’s frustration that we neither know officially of an inquiry or anything of its focus, but the lessons of the past year demonstrate clearly that attacking the legitimacy of the process will simply play into the hands of government.  If there is an inquiry, let it take its course.  In the meantime, I hope again that UK DPO’s can use the extra time available now to engage with the separate examination process to work together on a single UK submission every bit as good as this one from New Zealand published this week.

 

ADDENDUM – guidance published by UN Enable on the UNCRPD for Parliamentarians advises that:

‘The inquiry procedure is confidential and has to be conducted with the full cooperation of the State concerned.  Following the six month period in which it may submit observations, the State may be invited to submit details of measures it has taken to respond to the inquiry.  The Committee may at this stage request further information from the State.

The Committee may then publish a summary of its finding in its report to the UN General Assembly.  With the agreement of the State concerned the Committee may also publish the full report of its inquiry.’

Lies, damn lies and statistics

Eleven million people in Britain – with an estimated combined spending power of £80billion – have a disability’ claimed Mark Harper this week, as the government called on the UK tourism industry to improve its accessibility to disabled customers ‘“So, as part of our long-term economic plan, improving the accessibility of hotels and self-catering apartments and tourist attractions for disabled travellers is a no-brainer.’

Harper was relying in statistics drawn together by the Department for Work and Pensions which say: ‘There are 11.5 million people in the UK who are covered by the disability provisions set out in the Equality Act. This is 19 percent of the population – a similar level to the USA, Canada and Australia (FRS 2010/11, WHO 2011).’

As the DWP notes, these estimates are based on various survey findings and:

‘Estimates rely on self-reported responses to survey questions. These responses will be determined by the person’s understanding of the question and a range of other factors such as how they were feeling on the day they answered the question.’  

That is to say, a person may both fail to report an impairment at the time a survey is carried out and in theory at least over-state its effect.  Nevetheless, DWP go on to say that:

‘A person is defined as having an impairment if they have moderate, severe or complete difficulty with physical or mental functioning and activities are limited as a result. LOS estimates that 29 percent of the population have at least one impairment (LOS Wave 1 2009/11).’  

Given this is its own analysis, it’s unsurprising then that the DWP would have relied on these population estimates in its own Equality Impact Assessment for its policy to ‘introduce restrictions to Housing Benefit for working age customers living in the
social rented sector who are occupying a larger property than their household size requires’ known either as ‘ending the spare room subsidy’ or the ‘bedroom tax’ depending on one’s political leanings.  The Assessment finds that 63% of working age social rented sector HB claimants or their partners affected by the size criteria would be classified as disabled.

What is surprising, given these are official statistics, which the Minister for Disabled People has no compunction in relying on to make the business case to the tourism industry, is that the Secretary of State should question their validity arguing on LBC radio that:  ‘The figures you use are figures used for people’s self-declaration of their disability under the Disability Discrimination Act…..I’m not saying they’re right or they’re wrong. I simply say that’s their declaration. There’s no ongoing check. About a third are in receipt of something like DLA, which of itself is a payment to support housing costs.” 

What he may have reasonably suggested is that that not all 63% of social rented sector HB claimants tenants who are disabled and  ‘affected’ by the size criteria will necessarily be adversely affected for a reason related to their impairment or health condition because their impairment or health condition does not give rise to a specific need for additional bedrooms as per the criteria.  Rather what the Impact Assessment appears to be saying is that 63% of those to whom the policy will apply are disabled and for that reason they are affected, even if not adversely for a reason related to their disability.  

Of course, the same could be said for inaccessible UK tourism – clearly not all 11 million people covered by the disability provisions of the Equality Act experience barriers accessing UK tourism.  Yet what serves to make a powerful ‘no brainer’ business case for accessibility evidently makes for an politically unhelpful narrative for cutting social security.   

In fact Duncan Smith didn’t try to say this at all.  And no doubt he didn’t because he and his Department either don’t know or because – as with the impact of the closure of the ILF – they do know but don’t want to say what the adverse impact actual is.  Instead he queried the honesty of people when self-reporting an impairment or health condition in response to surveys included in the official statistics and he implied – misleadingly – that DLA exists to meet additional rental costs.  

All of which leaves the question that the Secretary of State was fumbling to avoid answering: how many disabled people are adversely affected by the policy, by what criteria and to what degree have the mitigating actions prevented this?

 

The right to independent living – progressive realisation or positive obligations?

AMENDED 18th August 2014

I’m currently working on guidance for National Human Rights Institutions on the rights of persons with disabilities.  I’m struggling to explain something I believe to be critically important in understanding disability rights: the unique interplay of civil and political rights with economic and social rights.  So this is a ‘testing testing, 123′ kind of blogpost and I invite comments, or should I say ‘help!’

Typically we regard civil and political rights, such as the right to life, to liberty and to a private and family life as of immediate application.  This is because – rightly or wrongly – we view these rights as being about restraint – that is, about the State or its agents refraining from acting in a way that violates them.  Human rights jurisprudence has begun to develop the notion of ‘positive obligations’ – that is, that the State has a duty to take measures to secure that a persons human rights are respected.  Doing so can incur costs, such as police training, the costs of the Courts system, holding inqests or having regard to dignity when carrying out care assessments.   Yet unlike economic and social rights – to health, to social protection and an adequate standard of living and so on – we do not in relation to upholding civil and political rights apply the doctrine of ‘progressive realisation’ whereby States only must fulfil them over time to the maximum of their available resources.

For a disabled person requiring support or assistance to eat, clothe him or herself, to go to the toilet, to get out of bed and go out of the house, rights to liberty or to a private and family life have little meaning unless (a) sufficient such support is available and (b) the person can exercise choice and control over how it is provided – where, when and in what manner – such that it facilitates their liberty and their right to private and family life.   The very real consequences of not committing resources to supporting these rights is plenary guardianship and institutionalisation at one extreme, through to a general lack of choice and control and isolation from the wider community on the other.

To these ends, Article 19 of the UNCRPD – the right to live independently and to be included in the community requires that:

‘States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.’

The Joint Parliamentary Committee on Human Rights in its report on independent living noted that Article 19 ‘gives more specific meaning to the general rights to liberty and security of person and to private and family life in the particular context of disabled people and their living arrangements.’  Yet in order to disabled people to enjoy the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and to not be obliged to live in a particular living arrangement, a sufficient range of in-home, residential and other community support services etc must be available.

So to which doctrine should Article 19 therefore be the object – progressive realisation or immediate realisation?  Or does Article 19 give rise to something else altogether? Is this why some have suggested that despite the terms of reference given to the ad hoc Committee drafting the Convention to not go beyond the existing international ‘Bill of Rights’, that Article 19 in effect amounts to a new, distinctive right? The reference to personal assistance bears no relationship to any of the existing economic and social rights for example. But it is perhaps the ultra-indivisibility of rights in Article 19 that marks the most significant departure and by doing so renders the doctrines of immediate or progressive realisation unhelpful.

So far so theoretical.  But the answer to this question has very real consequences.  In the UK, while legal and administrative steps may still be being taken to accord disabled people more control over the support they receive, austerity measures mean fewer people are being deemed eligible for support and the range of financial and practical support is in fact shrinking.  This in turn limits the scope for disabled people to exercise choice over where and with whom they live, and in particular to avoid segregation from the wider community, which in turn impedes rights to liberty and to private and family life as expressed through the concept of independent living.   The ongoing insistence of government’s, including the UK’s, to regard economic and social rights as secondary to and disconnected from civil and political rights (or to attack or dismiss the idea of them altogether as this government has done several times) risks massively undermining our ability to advance the civil and political rights of disabled people, contingent as they are on investment in rights-respecting supports (let alone people’s standalone social and economic rights to health, an adequate standard of living, housing, employment and work).   Yet the analysis above suggests that – despite requiring the investment of significant public resources – the right to live independently and to be included in the community may not rest upon economic and social rights at all, but rather rely upon a significant expansion of the doctrine of positive obligations.  And if that is the case, by what yardstick might one judge whether States are committing enough resources to respecting the right to independent living and conversely when are they in breach?

The final word here goes to Arnardóttir and Quinn (2009):

‘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’

 ADDITION 18th AUGUST 2014

Just been reading again the General Comment of the UNCRPD Committee on Article 12 and note this at para 30, which must logically also apply to Article 19:

The right to equality before the law has long been recognized as a civil and political right, with roots in the International Covenant on Civil and Political Rights. Civil and political rights attach at the moment of ratification and States parties are required to take steps to immediately realize those rights. As such, the rights provided for in article 12 apply
at the moment of ratification and are subject to immediate realization. The State obligation, provided for in article 12, paragraph 3, to provide access to support in the exercise of legal capacity is an obligation for the fulfilment of the civil and political right to equal recognition before the law. “Progressive realization” (art. 4, para. 2) does not apply to the provisions of article 12. Upon ratifying the Convention, States parties must immediately begin taking steps towards the realization of the rights provided for in article 12. Those steps must be deliberate, well-planned and include consultation with and meaningful
participation of people with disabilities and their organizations.

A partnership of equals

There is lots wrong with ‘The Plan’ to achieve what the government failed to in securing the release of people with learning disabilities from Assessment and Treatment Units, not least the self regarding way it was announced by Sir Stephen Bubb.  The lack of involvement of people with learning disabilities and their families in the decision to hand this role to voluntary sector organisations under the ACEVO umbrella mimics the very problems which have led us to this point – people being regarded as objects to be ‘done to’ not as active rights-holding citizens with unique insights, ideas and a major contribution to make to solving this challenge.

The way this came about suggests panic in the upper echelons of government and the NHS and a desire to get this ever more hot potato off the desks of Norman Lamb and Simon Stevens.  Panic does not however make for sensible answers.  Several hundred fewer people in ATU’s by a specified date does not mean several hundred people with learning disabilities and their families with the support they require to live successfully in the community.   Yes it is of course desirable to secure people’s release from ATU’s at the earliest opportunity, but that could be done without providing any viable alternatives and it is the creation of these rights-respecting alternatives that should be the mark of success.  The mention of ‘investing in buildings’ and of 10 year contracts in Bubb’s blog should raise major alarm bells sounding as it does like the Hungarian model of de-institutionalisation’ not a genuine attempt to foster inclusion.

The reality is that neither Stephen Bubb’s breakfast club or people with learning disabilities and their advocates can make this happen on their own.  In a contrite follow up blogpost Bubb has said he recognises this, acknowledging the importance of ensuring ‘the voice of the client, carers and families are heard’ but the proposals he sets out still suggest a passive role.

What is required is a genuine partnership of a type all too rare: people with learning disabilities employed in key roles by the organisations commissioning community based solutions, mechanisms such as integrated personal budgets and the support to direct and manage them which allow individuals and families to commission their own support, peer support for those moving from institutions back into the community and their families and for people with learning disabilities and their families to have a seat around the table at the breakfast meetings where such plans are hatched.

In short, what is required is a partnership of equals.