It’s time to make disability equality relevant again.

The period between the early 1990s and 2010 saw huge leaps forwards in law to prohibit discrimination and to advance equality for disabled people.  From the first Disability Discrimination Act 1995, twenty years ago this year, to the Disability Rights Commission Act in 1999, the Special Educational Needs and Disability Act 2002 which saw the DDA extends across schools, further and higher education, the extension of the DDA’s employment provisions to all employers in 2002, the implementation of the duty on service providers to make adjustments regarding physical access in October 2004 and the Disability Discrimination Act 2005, which extended the Act’s provisions to transport providers and to public functions, expanded the duties of landlords and introduced a duty on public bodies to promote equality of opportunity for disabled people.  The Equality Act 2006 replaced the Disability Rights Commission with the Equality and Human Rights Commission.  The Equality Act 2010 incorporated into a single piece of equality legislation the provisions of the Disability Discrimination Act’s albeit maintaining most of the features that distinguished them from other areas of equality legislation related to gender, race, age and so on.  The latter act also extended the reach of disability discrimination law, extending duties to provide auxiliary aids and services as a reasonable adjustment to schools, prohibiting the use of pre-employment health questionnaires by employers and clarifying that direct disability discrimination applied to those associated with disabled people, such as carers, or perceived to be disabled, where they actual are or are not.   .

From the early to late ‘noughties’ ‘disability equality’ framed the agenda regarding disability policy in the UK.  Developments in the UK mirrored those internationally during this time, with laws to prohibit disability discrimination being enacted in North America, Australasia and across the European Union.  Today in the UK it sometimes feels like a forgotten agenda from a bygone age, which is why it’s so heartening to see the House of Lords choose to focus a ‘post-legislative scrutiny committee’ on the impact of the Equality Act 2010 for disabled people.

What has emerged in the intervening period is a yawning implementation gap.

In the absence of the Disability Rights Commission (DRC) and the ever more weakened Equality and Human Rights Commission (now smaller than the DRC was in 2005/6) there has been little if any official promotion or systematic enforcement of the law since the production of Equality Act guidance in 2010.

Changes to legal aid,  judicial review, the introduction of employment tribunal fees, the absence of alternative dispute resolution in relation to goods and services and the general decimation of the advice sector have cumulatively placed the law beyond most people’s reach.

Where the Disability Rights Commission’s helpline handled around 120,000 inquiries in its final full year of operation, the Equality Advisory and Support Service (which handles calls in relation to all the grounds covered by the Equality Act) now handles between 40-50,000 inquiries a year – a fraction of what the DRC did (interestingly 62% of those inquiries relate to disability).

Through secondary legislation the government has eroded the influence and effect of the Public Sector Equality Duty (PSED) in England.  Once explicit duties on public bodies to involve disabled people in the discharge of their disability equality duties – duties which research showed had enjoyed the a transformative effect -are now only implied in guidance. Explicit duties to conduct equality impact assessments regarding policies and decisions are not only gone, the very step itself has been attacked by the Prime Minister David Cameron as unnecessary red-tape, a sentiment echoed by the Chair of the PSED review, despite having found no evidence to sustain his argument.  The ‘red-tape challenge’ leading to the Enterprise and Regulatory Reform Act also unhelpfully positioned anti-discrimination law as a constraint on enterprise and economic growth, rather than as a vehicle for ensuring that Britain draws on all of its talent.

Away from government and public bodies a principal point of engagement between disabled people’s organisations and the Act has been to seek to utilise the Public Sector Equality Duty as a bulwark against spending cuts and policy reforms.  While this has led to some successes in slowing the pace of reform and in exposing potential impact it has generally failed to halt damaging policy implementation, as has been seen in relation to the Independent Living Fund.  A succession of such cases has arguably further weakened the influence of the Duty itself, with each case revealing its limitations as a ‘process duty’ (that is, so long as public bodies follow the right steps they can lawfully implement decisions which set disability equality back).  Moreover, the duty is now largely characterised almost solely as a tool to frustrate the implementation of government policies, rather than a vehicle for policy implementation.  What political support it may have enjoyed has as a consequence been eroded further still.  I have little doubt that a Labour-led government between May 2010 and May 2015 would also have become intolerant of a succession of such cases.

Of course the key difference is between equality in a time of growth and a government committed to unprecedented increases in public spending and equality in a time of recession and a government committed to unprecedented spending reductions.  It is perfectly understandable that people should look to the law to protect them from reforms which will without doubt damage their wellbeing and set disability equality back.  But it would be unwise – in my opinion – to continue to allow the equality agenda to be cast solely in those terms.  Doing so further creates the imperatives for government to block routes to redress and enforcement and to cast the law as a burden.  We need to be able to demonstrate the central role of equality law, policy and practice in building an opportunity society in which everyone can flourish and in creating and sustaining, inclusive economic recovery.  Government must once again regard equality law, policy and practice as a means to its own policy ends, not always at odds with it.

Regarding disability equality, an opportunity lies in what appears to be have been largely overlooked: that the Conservative Party manifesto committed to halving the employment gap between disabled and non disabled people.  People are right to be fearful of how this commitment might be used to justify further, largely unrelated reforms to disability benefits as indeed is being touted in relation to benefit rates of those in the Work Related Activity Group.  But the opportunity is to re-assert the question of discrimination and labour market disadvantage – to ensure that its influence on disabled people’s job prospects is not ignored and to set forward proposals for how discrimination and structural disadvantages can be addressed as part of a comprehensive new approach designed to help achieve the government’s goals, not to stand in their way.

Disability equality can equally be re-asserted in relation to the achievement of other policy aims, such as implementation of the Care Act 2014 or the NHS Five Year Plan, where issues of accessibility and inclusion are instrumental to achieving prevention and well-being.

Without this I fear all the gains of the 1990s and 2000s risk becoming a curious footnote in  history.  The Equality Act itself will remain, but like a long dormant volcano, it will have little bearing on disabled people’s futures. As a starting point I encourage as many people as possible to submit evidence to the House of Lords Committee.

Disability equality is too important to give up on.  It’s time to make it relevant once again.

Is the welfare state responsible for prejudice towards disabled people?

In truth, we do not know what motivates people to exhibit hostility towards disabled people, from general incivility though to name calling, harassment, abuse, violence and in some cases killing.  As Katherine Quarmby has reminded us, the last government accepted the recommendation of the Equality and Human Rights Commission to carry out research into the motivations of perpetrators, but it has thus far failed to honour that commitment.  Hence what I am about to write must be regarded as speculation.

I think it is probably safe to say that a great deal of such hostility is a manifestation of prejudices towards disabled people that are widely held.  For the most part people do not act on those prejudices in a fashion that is experienced by disabled people as hostility per se.  Such prejudices do nevertheless shape behaviours towards disabled people, some of which can become institutionalised and which manifest themselves as, for example, the way disability is framed in public discourse (‘our most vulnerable citizens’), discrimination by employers and services providers, low expectations of disabled pupils in school and so on.  To these ends hostility can be viewed as part of a continuum, informed by the same well of prejudice that underpins discrimination or generally derogatory views regarding disabled people.

Various campaigners and commentators have suggested both that disability hate crime is on the rise and that the primary driver is so called ‘scrounger rhetoric’ (the claim or implication in media reports or the comments of politicians that people are evading their obligations to work, preferring instead to live off the welfare state).  There is in fact no  evidence that disability hate crime is rising.  According to the most comprehensive analysis is has remained broadly stable since 2007, albeit at a shocking 72000 incidents per year.  We do not know the scale of disability hate crime before that date as it was not measured, but we do know that it existed sufficient to make the case for legislation to recognise hostility towards disabled people as an aggravating factor in the Criminal Justice Act 2003.

Given that disability hate crime was not was recorded by the police until 2007 it is unsurprising that recorded disability hate crime has risen since (from zero).  This is especially so given the prominence of the issue in the media, in government policy and programmes, the EHRC’s major inquiry into disability related harassment and the prominence given to it by the police and Crown Prosecution Service.  But after 8 years recorded disability hate crime still amounts to less than 2000 a year of the estimated 72000 incidents.   The real story is not that recorded disability hate crime is rising, it’s that it is not rising fast enough and that police performance across the country is extremely patchy.  Those leaping on statistics such as that quoted by the Scotsman last week (portraying a rise in recorded disability hate crime from 48 in 2011 to 177 at the end of last year as a ‘270%’ rise in disability hate crime) are unwittingly helping to obscure institutional failure.  The real story in Scotland is that 97% of incidents go unreported, un-investigated and unpunished.

Does ‘scrounger rhetoric’ create a hostile climate for disabled people in which prejudices are shaped or given more legitimacy, or in which misunderstanding is more likely to spill into hostility?  That seems likely I think, just as there are spikes in hostility towards people of Asian origin in the light of terrorist attacks and media reports surrounding it, or which correlate to anti-immigration messages in the press of from politicians: it helps create a ‘suspect community’.  Certainly many people have reported hostility in which their status – real or perceived – as a benefit claimant has featured.  Yet there is no evidence of a spike in disability hate crime since 2010.

As I have said before, laying blame for disability hate crime at the door of welfare reform and the rhetoric surrounding it is therefore deeply spurious, instrumentalising without an evidence base  disability hate crime to the ends of challenging welfare reform.  For scrounger rhetoric to be a primary driver of disability hate crime the statistics require that it would have played a central role not just in the past 5 years, but for the past 10 or more.  This is not to suggest that it plays no role.  Rather that it is not primarily responsible for disability hate crime and therefore focusing on it risks ignoring the real causes and undermining the search for solutions.

I do think it is likely is that the prejudice underpinning hostility is rooted in long held views of disabled people as of less worth, and it would seem obvious that scrounger rhetoric might compound rather than challenge such views.  However, the response to ‘scrounger rhetoric’ is equally problematic for rather than emphasising disabled people’s worth it commonly emphasises their ‘vulnerability’ and ‘weakness.’  Such ideas are invoked to invite compassion.  Yet I fear they compound the idea of disabled people as being of less worth – as objects, not citizens.

And this is, I believe the far deeper problem we face of which so called ‘scrounger rhetoric’ is one manifestation: that to be legitimately disabled is to be weak and vulnerable.  Those not conforming to such stereotypes, yet seeking society’s support via social security or charity  become objects of suspicion – falsely claiming disability benefits and withholding their productive potential from the world of work.  Vik Finkelstein, a veteran of the anti-Aparthaid movement and key architect of the UK’s disability rights movement predicted this 40 years ago when he said of plans for a specific disability benefit:

‘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 (Disability) 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.’

Despite all the progress made in building an agenda for disability equality and inclusion since Finkelstein outlined these risks, they continue to overwhelm our ability to escape this completely destructive conception of what it is to be disabled.  Rather than State support being regarded as an investment in disabled people – like education, health or transport – it is cast almost solely as the cost of looking after the weak and vulnerable.  And it is the idea of disability as a category of ‘need’ – rather than a form of social oppression – that is so entrenched and which continues to dominate public understanding and discourse.

Scrounger rhetoric is not – in my estimation – responsible for disability hate crime.  Rather, both draw from the same poisoned well that continues to regard disability as an intrinsic deficit.  To have strengths and assets is to not be disabled enough and hence to be legitimately suspected of faking it.  To be disabled enough is to be regarded as weak and vulnerable – an object of compassion (disguising prejudice which can find expression in hostility).

We have to challenge and move beyond this modern day ‘ducking stool.’ ‘Work for those who can, security for those who cannot’ is a divisive force that no longer serves disabled people’s interests whether capable of paid employment or not.  In the face of the challenges ahead there should be no more demands for ‘care and welfare’ – the fight must for investment, support and inclusion for all.  Only then will we genuinely begin to get the roots of prejudice and to build a safe and genuinely inclusive society.

Lazy misreporting of startling rises in disability hate crime disguise institutional failure

Disability hate crimes in Scotland have not risen by 270% in five years as so misleadingly reported in the Scotsman.  Overall incidence of disability hate crime has – according to an authoritative report by the Equality and Human Rights Commission – remained stable year on year since 2007 (at an estimated 72000 per year for England, Scotland and Wales combined). Based on the size of Scotland’s population we might therefore reasonably estimate around 6000 incidents per year in Scotland.

What the data reported by the Scotsman shows is a rise in the number of such crimes reported to and recorded by the police, not in overall incidence.  Based on the estimated 6000 incidents a year this amounts to an increase in the proportion of such crime reported to and recorded by the police from around 0.8% of all such crimes in Scotland in the year ending March 2011 (48) to just under 3% of all such crimes last year (117).  This suggests progress, of a sort.  But looked at another way it continues to mean that around 97% of such incidents are not reported to or recorded by the police or other agencies.

That should be the story – not that disability hate crime is going up (there is no evidence that it is), but that it is not going down and that criminal justice agencies are failing to ensure the rights of disabled people to live their lives in safety and security.

Yet too often the data is being leapt on and completely misrepresented to serve other narratives regarding the impact of welfare reform and the rhetoric surrounding it, without any hard evidence, as in this recent piece by Frances Ryan in the Guardian.

The facts are that:

  • There is no evidence of a rise in the incidence of disability hate crime since 2010 – it has remained broadly stable at 72000 incidents per year since 2007
  • While there may be sound anecdotal evidence which must be taken seriously, there is no hard evidence that a primary driver of disability hate crime is so called ‘scrounger rhetoric’ (important to note that we know very little about the motivations of perpetrators and that the last government promised and then failed to carry out research into the issue).  I will write separately about this.
  • The numbers of crimes reported to and recorded by the police and other agencies has risen, as have the number of prosecutions, since they first began to be recorded in 2007.  This seems quite natural, as not only were they not being recorded before that date, awareness has risen substantially and there have been national policies and programmes to address it.  As I say above, the real story is how little difference these appear to have made.

Such misreporting is dangerous and damaging.  Not only does it promote unnecessary fear of personal crime, it smoothes the way for broken criminal justice institutions to pass off their failure as being a product of a ‘broken society.’

Fantasy disability manifesto

So the General Election is upon us.  We’ve seen what the Party’s have to offer disabled people.  It’s been somewhat disappointing, both in tone and content.  Here are five things that the various manifestos perhaps still offer an opportunity to pursue.

Independent Living reboot

Legislation to codify Article 19 of the UNCRPD, requiring local councils to lead on the production and implementation of independent living strategies within a national framework for action.  A duty to involve disabled people. Support for a national network of independent, user led Access to Living Centres.  Investment in social care, recognised as part of the national infrastructure.  Reform of the Mental Capacity Act to codify models of supported decision making.

Inclusive economic growth

Action to narrow the employment gap between disabled and non-disabled people embedded in national, regional and local economic growth strategies, and extracted from ‘welfare to work.’  DWP dissolved as a department of government.  Personal employment support budgets replace the work programme and expert brokerage widely available.  Significant increase in investment in the Access to Work scheme.  A major focus on up-skilling disabled people, in particular those age 16-24 including through apprenticeships

Action on disability related costs of living

A holistic plan targeting the causes and consequences of extra disability-related costs of living.  Includes strategic use of national and local government procurement power to drive down the costs of specialist equipment and technologies, incentives to business to innovate in producing inclusive products and services, ‘asset-based’ interventions such as supporting home ownership and the changing of rules, such as in relation to social care charges, which act as a disincentive to saving.

Tackling prejudice and promoting understanding

Seed resources provided by government to establish an organisation to co-produce and lead the implementation of a national plan to tackle prejudice towards disabled people and to promote understanding.  Begins with in depth research to understand the nature of prejudice towards disabled people and the kinds of methods that are likely to prove effective in uprooting it.

Access to justice

There will be no financial cost of bringing a case to employment tribunals and consideration will be given to creating equality tribunals that will also hear cases regarding discrimination in the field of access to goods, facilities and services.  A truth and reconciliation process will be established concerning the historic institutionalisation and ill-treatment of people with learning disabilities.

 

On Conservative proposals on or affecting disabled people

Yesterday I blogged about Labour’s ‘mini manifesto’ aimed at disabled people.  The Tories haven’t to the best of my knowledge produced an equivalent so the comments below are based on those elements of their manifesto that appear most immediately relevant, namely employment, social security, health and social care, human rights and equality and the Paralympic legacy.

1. Starting on the positives, I think the ambition here is really welcome: ‘we will aim to halve the disability employment gap: we will transform policy, practice and public attitudes, so that hundreds of thousands more disabled people who can and want to be in work find employment.’  Of course people will be worried about how this plays into welfare reform (see below) but I’m personally pleased to see closing the employment gap so visibly back on the agenda and I welcome the emphasis on policy, practice and attitudes.  But the Tories need a better plan than CSR-lite Disability Confident to bring this about.  Ensuring that the plan to create 3 million new apprenticeships is inclusive will be critical. Restoring easy access to employment tribunals for those who have experience discrimination would be a way for the Tories to celebrate their own legacy in having introduced the Disability Discrimination Act 20 years ago this year.  Expanding rather than contracting the Access to Work scheme is central to making this work.

2. On welfare, well what can one really say without any of the detail other than £12 Billion more cuts will be devastating and undermine pretty much every other objective – employment, health, social care.

3. On social care, the proposals are entirely focused on older people and as with Labour the Tories propose integration with health, as well as devolution to City Regions.   And as I commented with respect to Labour proposals, my concern is of social care becoming a subset of the heath system, ignoring the role social care places within a wider framework of promoting independent living.  While the Care Act includes a set of well being outcomes which do situate social care within such a framework, the devolution and integration of health and social care indicates that they may not get much of a look in in future, especially in the light of the ageing population.  Moreover the big figures quoted come nowhere near addressing the social care funding gap.

4. On education it is appalling to see the Tories celebrate creating ‘2,200 more special schools places through our free schools programme’, confirming my fears that the political shibboleth of parental choice is going to undermine further progress on inclusive education – a key building block of an inclusive society.

5. Talking of inclusive societies it is curious that the commitment to build on ‘our Olympic and Paralympic legacy’ includes no proposals regarding disability sport or anything concerning disabled people at all.  Odd as I thought that had been a big focus of the Office for Disability Issues in recent years.

6. Finally – and critically – The Tories propose to scrap the Human Rights Act in order to ‘break the formal link’ between British Courts and the European Court of Human Rights.  Hence in future British Courts would not be required to take account of the jurisprudence of the European Court of Human Rights, which in recent years has made groundbreaking judgments affecting disabled people – jurisprudence that is increasingly taking account of the UN Disability Rights Convention – such as in relation to hate crime, institutionalisation and independent living.  Would our own Courts be as prepared to push the boundaries for disabled people’s human rights?  I don’t think so and disabled people should be very concerned about these proposals.

All in all, good ambition on employment and like the framing of an inclusive economy, but most of the policies in here will undermine the opportunities of many disabled people to take advantage of economic growth, as well as generally leading to a further depreciation in people’s well being and their enjoyment of basic human rights.

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.