A better future for disabled people?

Today Labour launched its ‘mini-manifesto’ on disability.  Here, for what it’s worth, are my immediate thoughts:

I really welcome the framing – emphasis on what disabled people contribute and have to contribute, on opportunity and independent living. This about ambition for people, not simply ‘looking after’ them.  It has felt as though this vision of disability rights had been parked in 2010.  Making this the true test of policy is exactly what’s required to jolt us out of the downward spiral of welfare toughness that has blocked out the light for far too long.

But how far do the proposals go to advance such an agenda?

1. Good to see emphasis on independent living through integrated services, but it worries me that this will be integration into health rather than an integration which accords parity to  the range of outcomes described in the Care Act.  It also seems limited to health and social care, when what we really need to get back to is the thinking and principles which underpinned the ill-fated Right to Control.   Basic point: services may be fragmented, but people’s daily lives are not.  Liz Kendal gets this I think and I hope Labour will be brave enough in office to go further with an integration agenda based on the principle of giving people a life, not a service.

2. Obviously positive to see the commitment regarding Assessment and Treatment Units, but really need to see Labour’s plan.

3. I’m sure the commitment on teacher training is welcome, but it would be good to know what the broader position of Labour now is on inclusive education, especially in the new context of free schools and uber parental choice.

4. Scrapping the Work Programme and localising support is welcome (after all, there’s very little Labour could do to make the current system worse!).  As per my first point, I’d like to see Labour experiment at least with personalisation in relation to employment support, along the lines of proposals Liz Sayce and I produced in 2013, which would put disabled people seeking work and employers in the driving seat as commissioners of the support they need.  I hope Labour doesn’t again bow to the influence and pressure of the big employment support providers, wasting more £millions of public money on block contracts and including the perverse incentives to skim and park of the Freudian payment by results.  Perhaps they should be brave enough to scrap DWP altogether and move national leadership for employment support to the department leading on business and skills, linking it to enterprise and growth rather than the dead hand of benefits reform?

5. On hate crime, I feel like a stuck record, but disappointing to see Labour repeat the myth that the incidence of disability hate crime has risen.  It has not – the only known rise has been in reporting, which is most likely to be a sign of progress.  I don’t know if making it a freestanding offence will make a radical contribution, but it certainly won’t do alone and what is really required is a major initiative to tackle prejudice towards disabled people to prevent hostility before it happens.

6. On the WCA – my own view is that the problem isn’t with its ‘flawed operation’ but with the fact that it is based on flawed logic.  But I don’t expect much change here so anything that makes the system fairer and more humane within its existing terms is I guess to be welcomed.

7. On the costs of living, the cancellation of the ‘bedroom tax’ and a freeze on energy bills may benefit some disabled people disproportionately (but nowhere near as many as figures banded about suggest).  I can’t see how the proposals for rail operating companies and bus providers shift us from where we already are, but I may be missing something.  It’s perhaps telling that the commitments on PIP are in the previous section on social security, with only a commitment to administer assessments more speedily.  PIP is a benefit designed to contribute towards the extra costs of disability.  Hundreds of thousands of people will lose it (and with it their passport to other benefits such as motability severely limiting people’s life opportunities) while many others who would have received DLA will not received PIP in future.  This is a cost of living crisis in the making, about which the manifesto says nothing at all.

8. It’s welcome that Labour will commit to conducting equality impact assessments.  It would be more welcome if they committed to restoring impact assessment as an explicit requirement of all public bodies under the Equality Act, as they proposed during the Enterprise and Regulatory Reform Bill debates in Parliament in 2013.  It would also be good to see proposals on supporting people to access courts and tribunals when they have experienced discrimination, and proposals to beef up enforcement via the EHRC or alternative mechanisms.

9. It’s also welcome to see Labour’s proposals regarding involvement.  It will be useful to see how the detail of the proposal for a Committee distinguishes it from Equality 2025, established by the last Labour government.  It would also again be good to see Labour reinstate the specific duty on public bodies to involve disabled people in meeting their obligations under the Public Sector Equality Duty.

10. With respect to 8&9 these are largely about restoration of previous policy.  Labour has linked these to a commitment to implement the UN Convention on the Rights of Persons with Disabilities.  As the Joint Parliamentary Committee on Human Rights concluded in 2012, while both are important they are insufficient alone to bring implementation about.  Indeed, a succession of Court cases since 2010 has demonstrated how these ‘process duties’ can allow public bodies to show ‘due regard’ to disability equality while at the same time implementing policies which do huge damage, such as closing down the Independent Living Fund without concrete alternatives to replace it.  Hence if Labour are genuinely serious about a ‘better future for disabled people’ they should use the occasion of the UNCRPD Committee’e examination of the UK – expected 2016/17 – to co-produce a national action plan for implementation of the Convention, replacing the vague, un-measureable ‘Fulfilling Potential’ with a set of genuine goals and milestones.

All in all, very welcome framing and rhetoric from Labour, but many of the specific proposals underlying it are modest and mostly about tinkering or some light restoration rather than large scale refurbishment or building anew.   Maybe in the closest election fought in my lifetime that’s unsurprising, but on the other hand given the scale of the challenges faced I hoped for a bit more of the vision thing.

Why it’s time disability rights activism got its mojo back.

Over half of disabled people are not in paid employment. For people with learning disabilities the percentage who have never had a paid job is a shocking 79%.   The vast majority of disabled people who are excluded from the labour market are so not by their impairment or health condition but by a combination of direct and indirect discrimination, wider barriers such as in relation to transportation, lack of supports, low pay and – for a significant number – lack of qualifications and experience. A target of reducing the numbers of disabled people forced to rely wholly on benefits, or charity, for their livelihood is therefore entirely laudable one, in the interests of disabled people and wider society, both socially and economically.

Throughout the 1990’s and the ‘noughties’ the goal of narrowing the gap in employment participation between disabled people & people with long term health conditions and the wider working age community was pursued without controversy as part of the equality agenda.   This goal underpinned the case for the Disability Discrimination Act (DDA) and formed one of five that guided the work of the Disability Rights Commission (DRC), which strove to promote equality of opportunity for disabled people to ‘get in, get on and stay in’ paid employment.

The DRC embarked on a major programme of action aimed at employers, including working with the CBI and Federation of Small Businesses, conducting major advertising campaigns, producing and disseminating guidance and toolkits to raise employer awareness, address fears and build confidence. Simultaneously it sought to raise awareness among disabled people of their rights, offering a free Helpline, on-line information and advice and engaging in litigation.  Its policy team (which I headed up 2004-7) sought to influence public policy developments, including in relation to welfare reform, education and skills, independent living, housing, transport and access to the built environment.

In short, the agenda pursued was one of seeking to create the opportunity infrastructure that would help facilitate disabled people’s passage from objects of care and charity to being able to – in the words of the Disability Rights Commission’s mission – ‘participate fully in society as equal citizens’.   The welfare reforms that punctuated the Labour government’s of 1997 to 2010 were accompanied by efforts to build opportunity – whether via the developments in anti discrimination law, implementation of the Prime Ministers Strategy Unit report on the Life Chances of Disabled People, the creation of the Office for Disability Issues and Equality 2025, Valuing People, the Independent Living Strategy 2008, the ‘right to control’ included in the Welfare Reform Act 2009 and the Pathways to Work programme. Acknowledging these various initiatives is not to say they were all successful or ultimately right – but it is to recognize that there existed for a time at least a clear direction of travel.

And then came the financial crash of 2007/8 and with it the beginning of the end for the pursuit of the disability rights agenda that had dominated the previous two decades of activism in the UK.

The then Chair of the Disability Rights Commission had already identified a major fault-line in our approach to disability rights when in a speech in 2006 (on a platform with the newly elected lead of the Conservative Party David Cameron) Sir Bert Massie suggested that ‘disabled people have been invited to look up to the stars while having the rug pulled from beneath them.’   His comments referred to the fact that by 2005/6 the majority of local councils had already limited eligibility for social care to ‘substantial and critical’ with some limiting it to critical only. It was one thing for the then Labour government to seek to create a more open door through laws to prohibit discrimination, but what of those who required support to take up these new opportunities?

This was not simply a question of levels of public spending; it was equally about what Sir Bert described as the culture of low expectations which shaped the way public services and benefits were designed and understood. That is to say, while disability discrimination law signaled acceptance of the idea that all things being equal disabled people could thrive and compete on equal terms with their non-disabled peers, eligibility for benefits and services – throughout disabled people’s lives – remained grounded in a deficit model of disability.   As such, the public resources tied up in such benefits and services mostly could not and mostly still cannot be brigaded towards building opportunity. Rather, they continue to be regarded – with a few notable exceptions – as existing to ensure that people are looked after when they are deemed, by dent of their impairment or health condition, to lack agency or productive potential and hence be unable to sustain themselves. This is what I refer to as the ‘structural deficit’ in Britain’s approach to disability rights: a welfare state unaligned to the pursuit of disability equality.

Three decades earlier in 1974, Vik Finkelstein – a central architect of the British disability rights movement – prophesised these dangers noting how proposals for a disability income by the then Disability Alliance:

immediately create for us a vested financial interest in claiming what becomes our main asset “disability”. In addition, since the amount of (State) 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.’  

Finkelstein went onto argue:

‘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 (disability) incomes policy…’

Welfare reform was well underway by the time of the financial crash of 2007/8 and the paradox that Finkelstein identified between the pursuit of inclusion and equality on the one hand and a disability specific income on the other was well-established. While Ministers spoke of wanting to focus on ‘what people can do, not on what they can’t’ the complex, yet blunt and abstract systems established to assess eligibility did precisely what Finkelstein forecasted – attached greatest financial value to what people could convince the assessors that they could not do – to their deficits rather than their assets. Moreover the framing of employment and disability increasingly focused on individual human agency as the problem, with enforced individual responsibility (through conditionality and sanctions) providing the answer.

In this context , the blueprint for Employment and Support Allowance was in place by 2008, David Freud had been hired by the then Secretary of State for Work and Pensions John (now Lord) Hutton to find a way for DWP to secure the resources otherwise denied to it by the Treasury to invest in employment programmes through future savings in benefit payments, creating an ever stronger link between benefit conditionality, sanctions and the design of such programmes.

Plans for massive public spending cuts were being developed by all parties prior to the 2010 General Election, though it was only after that the true scale of the plans became apparent.   Post the election the cat was out of the bag, first with the Emergency Budget of 2010 and then the Spending Review – planned spending cuts on an unprecedented scale, falling heavily on social security spending and on local government.

Alongside this, a supposedly pro-business anti regulatory agenda saw erosion of key planks of the equality agenda such as the Public Sector Equality Duty, which was hollowed out, and the Equality and Human Rights Commission (which by 2007 had replaced the DRC) – both in its resources and independence, albeit in part a consequence of its own poor performance.

At the same time the voices that had shaped the pre-crash disability rights agenda appeared to be supplanted by a new breed of welfare right activists, in particular harnessing social media, whose primary objective was defence of the social security benefits for people who are ‘sick’.

These new campaigners found strong support from parts of the anti-austerity left who saw their plight as an opportunity to foster narratives of an uncaring, uncompassionate Government.  While the grassroots, participatory nature and successes of these campaigns tells a different story, the campaign messages generated were and are highly objectifying and quite at odds with the language that had been carefully cultivated to promote disability rights in the previous decades. While disability rights speaks of restoring legal, political, economic and social power to disabled people sufficient that they can become active citizens, the messages of the welfare activism of the past 5 years have emphasized the intrinsic powerlessness and vulnerability of disabled people and those with health conditions with the goal of harnessing public sympathy and political support.    Where disability rights seeks to foster high expectations to break down barriers and open up opportunity, welfare activism has engaged in nurturing low expectations to shelter people from obligations and conditionality regimes.  This is a long way from the famous slogan of the disability rights movement of yore: ‘piss on pity.’

Such messaging has not been limited to campaigning around the Work Capability Assessment, but deployed equally in relation to the replacement of Disability Living Allowance with the Personal Independence Payment and to the closure of the Independent Living Fund – key planks of the disability rights agenda that had been built over the previous 20 years.  This has helped obscure important distinctions being drawn between the history, nature and purpose of different benefits and entitlements which might otherwise have made some cuts and reforms more challenging for government to pursue.   In particular a distinction might be drawn between enabling supports and those that are designed principally to compensate people for their exclusion.

Further, these campaigners were not and are not for the most part pursuing rights to independent living or to work, sometimes viewing such goals with deep suspicion, fearful that they will threaten existing entitlements to social security or services. So dominant now is the language of responsibilities and obligations, that talk of rights and opportunities appears far too dangerous to some to contemplate. A number also strongly oppose personalisation, and in particular personal budgets – especially in the health arena – viewing it as privatisation.

This new breed of campaigners prioritise social welfare over social inclusion, just as the Disability Alliance had done so in the early 1970s.  In some cases they are overtly hostile to the language of rights and equality, believing it to have been exploited to institute the very social security reforms they oppose. The welfare activism lens has also seen campaigners oppose the closure of sheltered employment factories – a longstanding goal of disability rights activists which viewed such factories as segregation alongside institutional care and special schools.

But here’s the thing: disability rights has little specifically to say about the welfare of people who are sick.   That is not to say that people who are sick as a result of a long-term health condition should not expect to gain from advances in disability rights – of course they do and should just as other disabled people do and should. Rather it is to argue that disability rights is and always has been concerned with restoring power and building inclusion through expanding choice, control, presence and participation.   While these goals also demand social protection and an adequate standard of living, they do so as part of a wider programme of pursuing social, political, legal and economic equality.   Those goals – and the steps necessary to achieve them – seem to me incompatible with an agenda concerned solely with protecting benefit income for people who cannot work due to illness.

How we as a society address the social welfare of people who are too sick to earn a living income through paid employment seems to me an urgent question. But for the reasons outlined I increasingly believe that it is one that lies beyond the scope of disability rights and I don’t think we need to try to reconcile these objectives.  In fact, to continue to allow the entire public policy agenda regarding disability to be focused on and calculated around policy on benefits for people who are sick is a tragedy that has and is causing profound harm. Whole swathes of public policy regarding rights and inclusion have been disinvested in or abandoned altogether over the past 5 years. We also seem unable to think about employment and disabled people without getting lost in debates about benefit rules in a way that plays no part in debating the employment opportunities of other disadvantaged groups.

The disability agenda – and hence disabled people’s lives – must no longer be reduced to a question of who is or is not entitled to benefits. Welfare activism has its place, but it is not disability rights activism. On the 20th Anniversary of the Disability Discrimination Act 1995, disability rights activism needs to get its mojo back and to make the pursuit of power, opportunity and inclusion its primary goals once again.

A cap on talent

Well talk about pissing on your own fireworks….

Today, Minister for Disabled People Mark Harper MP made a statement to Parliament setting out reforms to the Access to Work scheme.  The proposals include a series of very welcome developments, including personal budgets for people with ongoing awards for travel or support (the money following the person), regarding support for self-employed people and the abandonment altogether of the ridiculous 30 hours of support rule.  Also promised are improvements to the way the scheme is administered.

And then this:

‘In 2013/14 the average Access to Work award was around £3,000, and half of users have awards below £1,000. However, 1% of users with awards over £35,000 per annum account for 15% of the budget. I want to ensure that Access to Work can help the most people it can in future. So as of October 2015, Access to Work will provide awards up to a limit set at one and half times average salary (a limit of £40,800 per person per year at October 2015). This will be uprated annually in line with the level of average salaries. I believe it is right that there is this explicit link to the labour market.’

For this policy to make any sense the effect of the policy must be to reduce the % taken up by the 1% of people whose awards are over £35,000.  That suggests that a reasonable proportion of the 1% receive awards over the proposed cap of £40,800 per year, which in turn means those facing the most profound – and costly to address – barriers in the workplace – and the enlightened employers who have taken them on – will receive less support in future to address those barriers.  That of course very likely means fewer of those people will be able to work.  I assume DWP will be publishing its impact assessment to this effect and explaining how it intends to mitigate this risk.

Spending on Access to Work represents around 0.08% of total annual DWP expenditure and research has shown a clear return on investment in the scheme for the Treasury.  The next government should increase investment in the scheme.  Todays proposals are an unnecessary and regressive cap on talent that Britain can ill afford.

Invest in me

I’m not aware of a single instance of a politician or newspaper describing disabled people receiving benefits as scroungers – certainly never people with a learning disability.

What I have observed is the way people on benefits have been made a ‘suspect community’ through the use of such language, deployed to distinguish the ‘malingerers’ from the ‘genuinely deserving.’  That is to say, some disabled people receiving benefits legitimately feel themselves to be under suspicion of claiming illegitimately, and with good reason.  Such suspicion is not limited to politicians, parts of the press, the twitching curtains of vigilante neighbours or to DWP’s fraud inspectors.  It seems to be a foundation stone of eligibility assessments and increasingly infects the way other support such as Access to Work is administered.  In fact the Department for Work and Pensions could quite accurately be renamed the Department of the Very Suspicious Indeed. The fact that DWP’s own statistics find that over 99% of people claim benefits honestly seems to do nothing to undermine the suspicion narrative, which all political parties seem to subscribe to with their language of ‘getting tough’ on benefit claimants.   This was of course predicted by disability rights advocates over 40 years ago, but some ideas take a long time to bed in….

But how to respond? Well firstly and critically, not by disabled people and their organisations saying ‘we are not scroungers.’   As the US expert on framing public discourse Professor George Lakoff warns in his book ‘Don’t think of an elephant’ “Negating a frame re-enforces the frame.”   That is to say, in repeating the negative language of others, even in the process of rebutting it, is highly likely that the negative idea is reenforced rather than challenged in the minds of audiences, doing your opponents work for them.  Lakoff uses the example of President Nixon appearing on TV and saying unprompted “I am not a crook” after which the American people decided President Nixon was most likely a crook.  ‘We are not scroungers’ seems highly likely to have the same effect.  In the case of disabled people, who have never been directly labelled scroungers, it’s even more damaging.

Second, it is also extremely damaging to the enterprise of building respect for the rights and inclusion of disabled people to advance the idea of disabled people as ‘deserving’ (i.e. not scroungers) when within the terms of current debates the price of not being regarded as a scrounger is to be considered to lack any productive value whatsoever – to be objectified, helpless and vulnerable.  Some may argue that pandering to such prejudices regarding disabled people has been an unavoidable necessity in the fight against welfare reform.   But the damage done – while maybe not as immediate as the loss of income and poverty that many will come to endure – is I fear profound.  Anyone requiring financial support is left with two options – plead their vulnerability or risk being regarded as on the take.

If we are to escape this bureaucratic ‘ducking stool’ we need to start reframing the discussion.  As a starting point, disability rights advocates should themselves reject the language of welfare and care.  In its place should be words such as ‘investment’ and ‘support’ which characterise state spending in other areas such as education, health, transport and support for business.  The financial and practical support disabled people seek should be characterised and regarded as part of the national infrastructure, like roads, hospitals, schools, rail networks and increasingly things like childcare – as what people need to get on with their lives successfully, not as what people require when they are unable to succeed as it is so often understood now.  This also includes support when we are too unwell to work, just as support is there for when we retire, or have children. Such support is also about how we create a successful society.

The way forwards is not to say ‘I am not a scrounger,’ it is, I believe, to say: ‘invest in me’.

You just haven’t earned it yet, Eddy

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

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

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

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

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

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

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

Now that might be worth voting for.

The Disability Rights Taskforce 2015?

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

Here’s what I’d love to hear Ed say:

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

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

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

 

 

 

 

Who’s got the power?

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

I want to offer two brief reflections:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But in the end I didn’t.  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

People with impairments and health conditions:

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

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

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

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

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

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

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

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

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