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.

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.’