No Go Britain – why messages, messengers and tone matter

Quick post about last night’s Channel 4 News No Go Britain debate.

On the one hand it was positive to see a disabled MP debating disability issues with a disabled audience for a sizeable chunk of a primetime news programme.  The debate didn’t shirk from the issues of greatest concern: welfare reform, the implementation gap on anti discrimination and accessibility and so on.

My Twitter feed lit up with people excitedly announcing that disabled people were giving one to the government:

‘watch disabled people NOW on Channel 4 News make a joke of the government’s representatives who talk crap…..Great to see the truth told by disabled people to the powers that be who should be shamed’

Robert Halfon MP trotted out the usual government lines about ‘spending £50 billion a year on disabled people’ and ‘having to make difficult decisions’, while ADASS Chair David Pearson spoke of how the aims of the Care Act were being undermined by local government spending cuts.   Their replies were undoubtedly weak.  They did not look comfortable.

The audience became more and more frustrated with their replies, the interventions angrier and angrier:

‘Your policy is designed to remove benefits from disabled people, designed to kill, to make people homeless. Your government has blood on its hands.’

Problem after problem was highlighted (with few if anyone venturing any solutions).  Channel 4 News will probably regard this as having made good TV – there is a reason Jeremy Kyle is such a popular programme.

But I’m afraid for disabled people this was very likely not a successful broadcast.

As the Frameworks Institute has established through extensive research, tone matters hugely in terms of how audiences respond:

‘A reasonable tone activates a community response and a can do attitude. When people are presented with a reasonable discussion of the problem, its causes and potential solutions, they are much better at processing and understanding new information.  Your audience begins to think about how to solve the problems rather than how to identify the agendas of the messengers.

An argumentative tone is one that is opinionated, highly charged and ideological.  When social problems are communicated in this tone, the audience tends to respond with skepticism regarding the messengers motives, hear that it is about politics and factionalising and are less likely to be open to new information and solutions-based thinking’

Many (but not all) of the participants adopted the argumentative tone.  The tweets surrounding the programme, such as those above, encapsulate that tone.  One particularly notable exception was the mother campaigning for Changing Places who was reasonable, explained the problem clearly and advanced an easy to grasp solution that many parents of non-disabled children would empathise with.

And therein lies the problem.  The opportunity of such a programme is not for disabled people in a studio to shout at a disabled MP, or to excite their existing supporters watching at home.  It is to reach the wider viewing public – concerned about their own lives, such as the income and council tax they pay, whether the council is going to fix potholes, their and their children’s future job opportunities and the state of the economy – and to enlist their support, not to alienate them.

Halfon and Pearson may have lacked credibility with those already angry about government policy and inaction around disability rights.  But what both did was frame their responses in terms of  trying to solve the difficult problem of providing services while reigning in spending –  a problem which much of the country sympathises with.  Moreover, both enjoyed the underserved benefit of sounding credible and that’s principally because they both came across as calm and reasonable in the face of anger and hostility.

Messages, messengers and tone matter whether we like it or not.

 

 

 

 

 

 

Leaving the ECHR will probably seem like a walk in the park after Brexit

David Cameron first threatened to scrap the Human Rights Act and replace it with a ‘British Bill of Rights’ in 2007.  Almost a decade later the phoney war continues, with Liz Truss today correcting recent media misreports that the new Prime Minister Theresa May had ditched the plan.  It had been reported that proposals drafted by Truss’s predecessor Michael Gove didn’t go far enough for May’s liking (they did not entertain the possibility of the UK withdrawing from the ECHR, which she called for during the EU Referendum).  But May herself had also suggested that going far enough would involve too many political obstacles (which provided her reasoning during her leadership campaign for saying she would not pursue leaving the ECHR).

So where does this leave things?

I expect May and her strategists are keen to leave open the possibility of human rights reform because it continues to serve as a useful political pawn in negotiations with right wing Conservative backbenchers and in positioning with the media over Brexit.  While human rights advocates are always keen to stress that the ECHR and EU are entirely separate, politically they are joined at the hip.  If May – as a remainer – wants to pursue a ‘soft Brexit’ with freedom of movement the ongoing price of staying in the single market, it seems reasonable to expect human rights reform to come back centre stage as the ‘taking control of our borders’ initiative.  In her apparent positioning for the leadership prior to the Referendum, May already argued that:

“The ECHR binds the hands of parliament, adds nothing to our prosperity, makes us less secure by preventing the deportation of dangerous foreign nationals – and does nothing to change the attitudes of governments like Russia’s when it comes to human rights….So regardless of the EU referendum, my view is this: if we want to reform human rights laws in this country, it isn’t the EU we should leave but the ECHR and the jurisdiction of its court.”

While proposals for human rights reform this side of Brexit may not advocate the immediate withdrawal from the ECHR, I expect careful wording will leave the possibility open as a ‘sunset clause’ and that promises may be made in private.   Post 2020, with May likely enjoying an increased Parliamentary majority, wanting to make her own imprint having spent four years implementing a policy she opposed, with Brexit under her belt but with a need to foster Party unity, facing a desperately weak and fragmented opposition, with Scotland marching towards independence, and with leaving the ECHR likely to score significant public and media support (if we held a referendum on the question next month, it seems fairly obvious what the conclusion would be), it isn’t unthinkable that May’s desire to withdraw from the Convention could materialise.  By then, as a political project it will probably seem like a walk in the park.

 

 

 

 

 

 

 

Life’s moved on Mike Oliver….

Last year disability rights campaigners in the USA marked the 25^th Anniversary of the Americans with Disabilities Act with nationwide celebrations. They did so not to sweep the very many inequalities still facing disabled Americans under the carpet. Rather, it was a chance to remind disabled people and the wider community of what the passing of the ADA symbolised and to refocus attention and energy on the campaign for full civil rights once again.

Contrast that with the 20^th anniversary of the Disability Discrimination Act in the UK. Mike Oliver’s opinion piece for Disability and Society is essentially the elongated whine he gave at Scope’s event last year to mark 20 years of the Disability Discrimination Act.   In  Oliver’s view the DDA was not the legislation disabled people campaigned for, disability charities and ‘careerist individuals’ wanted something else and won and everything since has been a disaster.   Oh, and it’s only going to get worse.

In his article, Oliver sums up the situation as follows:

‘This (whether to support the government’s Disability Discrimination Bill or continue to pursue preferred alternatives) effectively split the disability lobby. Those organisations like the BCODP and others controlled by disabled people wanted nothing to do with it and argued that the campaign for comprehensive, fully enforceable civil rights legislation should go on. The disability charities, on the other hand, argued that this was the best on offer for at least a generation and that they should be fully involved in order to make the best of it. Some disability activists also took the latter course and became members of the Disability Task Force, which soon became the Disability Rights Commission whose responsibility was to monitor and evaluate the Act.

The Disability Rights Commission also had an enforcement function and while some cases did come to court, on the whole it saw its job as trying to educate and persuade people and institutions not to discriminate. The New Labour Government when it came to power shortly afterwards showed no more inclination to enforce the law than the previous government had, and eventually the Disability Discrimination Act became subsumed under broader equalities legislation and the Disability Rights Commission was integrated into the Equalities and Human Rights Commission.’

Oliver concludes his piece saying:

‘My version of this history therefore suggests that, far from being the landmark legislation which many people now claim, it was little more than a betrayal of disabled peoples’ struggle to be fully included in society and any reading of disability history since the millennium supports this view and it is clear that discrimination against disabled people is still alive and well in twenty-first-century Britain.’

In researching this post I came across an Institute for Public Policy (IPPR) report ‘Equal Rights for Disabled People – The case for a new law’ by Ian Bynoe, Mike Oliver and Colin Barnes written in the early 1990s. The IPPR thank ‘the Spastics Society, the Royal National Institute for the Blind and MIND, whose generosity has enabled us to publish this book.’ Barnes and Oliver begin by stating that ‘Disabled people have identified institutional discrimination as the main problem, and anti-discrimination legislation as the most promising way of tackling it’ and make a powerful case for anti discrimination law while Ian Bynoe (then Mind’s legal director) explores what it might look like.

I have separately been told how the Spastics Society (now Scope) funded transport to enable activists to attend rallies, including direct action, while campaigning for the Bill. The Rights Now campaign spanned organisations of and for in a manner that committed the considerable resources of the disability charities to the political campaigning of people like Oliver and Barnes. While there was then and remains a vital distinction between as Oliver and Barnes put it ‘the philanthropic and liberationist elements of the disability lobby’ all had supported the private members Bills sponsored by Harry Barnes and Roger Berry, not least because they had been involved in writing them.

But there was clearly a difference of view about tactics when it came to whether or not to support the government’s Disability Discrimination Bill. While some believed it best to reject the Bill out of hand, others came to the conclusion that it offered a stepping-stone.

It is of course true that the Disability Discrimination Act 1995 fell way short of what disability campaigners had been striving for. Huge areas of life like education and transport were excluded. The employment provisions excluded employers of 20 or fewer staff. Some discrimination could be justified. The Act included what many regarded as a wholly inappropriate definition of disability. There was no enforcement body of equivalence to the Commission for Racial Equality and Equal Opportunities Commission.   Why celebrate that? Well because it did mark the beginning, not the end.

Within a year of the DDA coming into force, New Labour won its landslide victory of 1997 and established the Disability Rights Taskforce to advise government on the legislative reform necessary to accord ‘full civil rights’ to disabled people. Between 1997 and 2005 the DDA was extended to provide protection to people with progressive conditions and past conditions, to cover auxiliary aids and services such as BSL and accessible information in goods and services, to cover schools, further and higher education, to all employers, to address the physical features of goods and services, to cover housing, transport and public functions.   The Disability Discrimination Act 2005 included a positive duty on public bodies to promote disability equality.   The Disability Rights Commission opened its doors in 2000.

By the end of this period almost all the features of the Barnes/Berry Bill had been enacted or improved on. Little of this progress would have happened without the Taskforce or the DRC, which is why Oliver’s criticism that ‘Some disability activists also took the latter course and became members of the Disability Task Force, which soon became the Disability Rights Commission whose responsibility was to monitor and evaluate the Act’ is so wrong-headed. Perhaps the most influential figure of all throughout this period was the late Caroline Gooding, both a prominent figure in disabled people’s struggle for civil rights and a senior Director at the DRC. Is Oliver really suggesting that Caroline ‘betrayed’ disabled people by taking this course?

The Equality and Human Rights Commission absorbed the responsibilities of the DRC in 2007, with additional powers to promote human rights and good relations. The Equality Act 2010 embodied all the features of the Disability Discrimination Act, while adding some additional provisions such as protection from discrimination for those associated with a disabled person or perceived to be disabled, prohibiting the use of pre employment health questionnaires and extending the duty to provide auxiliary aids and services to schools.

The period saw other significant developments in disability rights. Independent living took a leap forward with the Direct Payments Act 1996. The Human Rights Act 1998 incorporated the European Convention on Human Rights into UK law (and the UK will not leave the Convention by leaving the European Union as Oliver incorrectly asserts on his article). Disability hate crime was recognized in s146 of the Criminal Justice Act 2003. There were generally positive developments in relation to legal capacity in the Mental Capacity Act 2005.   The Prime Ministers Strategy Unit report on the Life Chances of Disabled People (2005) followed by the creation of the Office for Disability Issues, the Equality 2025 strategy and Independent Living Strategy all took their lead from this focus on disability equality.  The European Union adopted the Equal Treatment Directive prohibiting discrimination in the field of employment.  In 2009 the UK confidently ratified the United Nations Convention on the Rights of Persons with Disabilities with cross Party support – a human rights instrument far broader in scope than our domestic equality law and which codifies the right to independent living.

Are we as a result of all these developments where we ultimately want to be? No, of course not. Is discrimination against disabled people still alive and well in twenty-first-century Britain? Yes it is. Do great inequalities remain? Depressingly so. Is this because there was a ‘split’ between activists in 1994/5? No, because it did not prevent the ambition of Mike Oliver, Colin Barnes and others for comprehensive legislation to outlaw discrimination against disabled people from ultimately being realized and in a relatively short space of time.

So why are we not where people, including Oliver and Barnes, imagined we would be as a consequence of having such law in place?

I think three issues stand out: a growing implementation gap, a failure to develop broader strategies for social change, and that disability rights has not radically reshaped attitudes towards of public policy regarding the financial and practical support some require to participate fully.

On the growing implementation gap, the recent House of Lords report on the impact of the Equality Act on disabled people deals with this well. Since the DRC closed, effort put into promotion and enforcement of disability discrimination law and disability rights more widely has declined considerably. While the recent profile accorded to disability rights by the new Chair of the EHRC is welcome, he presides over an organization spanning all grounds of equality plus human rights that in 2016 enjoys fewer resources than the DRC had in its last full year of operation 2005-6.   The introduction of employment tribunal fees saw a 45% drop in disability discrimination cases in one year. There are no alternative dispute mechanisms regarding complaints of discrimination by providers of goods and services.  As the saying goes ‘rights without remedy are no rights at all.  These issues should be priority advocacy objectives for disability campaigners.

The government’s overall response to the House of Lords report is to air its preference for gentle persuasion over enforcement, despite the evidence of its effectiveness being next to non-existent.   Mike is of course correct to identify the lack of enforcement as a problem, and so the promise by the chair of the EHRC for a ‘more muscular’ approach has to be welcomed. We should be striving for ‘more muscular’ approaches in other arenas too, such as the enforcement of building regulations and planning law, transport accessibility and the prosecution of disability hate crime.

But enforcement alone is never enough and in some instances is counter-productive. The law provides a floor. Sometimes we have to use it to ensure that basic minimum standards of behavior and action are upheld. Doing so can send powerful signals to others. Standards are set. But the law is only one lever for social change and relying on it alone will not achieve the deep institutional and social change that eludes us.

For example, the disability employment gap remains a stubborn 30% in the UK (in the USA it is 46.5%). Is this simply a matter of more enforcement of the Equality Act? Partly perhaps but disabled people’s labour market disadvantage stems from a complex web of interacting factors.   We can only make real progress by taking on the factors that are genuinely shaping opportunity. This does not mean abandoning the notion of ‘barrier removal’ – it just requires clarity about what these barriers actually are and identifying the most effective ways to remove them.   It must also not be assumed that legal enforcement of itself affects institutional change.   As the equality champion Bob Hepple pointed out, the law is just one sub-system in society, it does not sit ‘above’ all else, and in order for it to affect wider social change it has to interact with those other sub-systems such as culture, attitudes, practices and so on. Institutions such as the DRC/EHRC have a critical role to play in providing that translation and ensuring that legal judgments lead to real change on the ground.

But change is also being led by those other ‘sub-systems’. Take technology for example: yesterday while waiting at traffic lights on Tower Bridge Road I noticed a young woman using Facetime on her Iphone to conduct an animated conversation using British Sign Language with the person at the other end. ICT has radically transformed the lives of people with sensory impairments, arguably more than anti discrimination law ever could. The arts, media, sport, education and so on can all provide as if not often more powerful levers for change than the law and must be effectively harnessed to those ends.

The disability movement has adopted many methods of campaigning for change, showing itself to be highly effective at self-organization and mobilisation, parliamentary lobbying, influencing public officials, innovative practice, civil disobedience and strategic litigation. It has sprung an entirely new strand of academic research and thinking with disability studies departments around the world.   One area where I believe it has been weak is in strategic communications to reframe discourse and turn around public attitudes.   Paternalistic notions of disability as tragedy and disabled people as vulnerable persist, sometimes in the communications of disability activists themselves.   We are unlikely to see real progress unless we begin tackling discourse and attitudes head on, using framing methods such as those developed by the Frameworks Institute for example.

Last but not least, in the IPPR report Barnes and Oliver argue that anti discrimination law ‘can force the pace of change towards forms of welfare provision which are no longer discriminatory, but instead are truly enabling’

As I wrote earlier this week:

‘while it is true that government is required to comply with equality law (and the European Convention on Human Rights) when making new laws, it has never felt to me that the fundamental principles of disability rights – that people have a right to independent living, to inclusion and to participate fully in all spheres of life without discrimination – have been the starting point when it comes to designing policy and legislation regarding the financial or practical supports that some disabled people require to make those rights a lived reality.  In fact, there is evidence that these principles have been rejected outright.’

The DDA/Equality Act (and more recently the UNCRPD) and the principles underpinning them have impacted on wider public policy, but ‘welfare provision’ is clearly far from being ‘truly enabling.’   This continued detachment of ‘welfare provision’ from disability rights has not only undermined efforts to reform policy and practice in support of independent living and equality, it continues to leave such provision extremely exposed to austerity cuts.

Advocates in the USA have evidently reached the same conclusion, but rather than bemoan the ADA as having failed they have decided to try do something about it.   As the preamble to the Disability Integration Act, currently winding its way through the US Senate and Congress says:

‘The right to live in the community is necessary for the exercise of the civil rights that the ADA was intended to secure for all individuals with disabilities. The lack of adequate community-based services and supports has imperiled the civil rights of all individuals with disabilities, and has undermined the very promise of the ADA. It is, therefore, necessary to recognize in statute a robust and fully articulated right to community living.’

 The DIA would in effect subordinate ‘welfare provision’ to the goals of the Americans with Disabilities Act. Hence any failure to provide support, or providing support in a manner that does not accord with the principles of non discrimination and independent living would clearly be regarded as a violation of civil rights.   The Care Act does not achieve this and we should continue to strive for freestanding legislation to promote independent living.

In conclusion, the solution that Oliver and Barnes put forward has mostly been implemented, albeit with the shortcomings in implementation I outline above. But even without those shortcomings it seems unlikely it would have alone provided the answer that they hoped for.

Those who in 1994/5 chose not to engage with the government over the Disability Discrimination Act have been proved right.   Far from it: The DDA – from the first Act in 1995 to the final in 2005 and its incorporation into the Equality Act is worth celebrating both because it has changed countless people’s lives for the better and because it represents an enormous achievement by disabled people and their allies.   Characterising that achievement as failure dismisses the huge power disabled people had and have to shape events.   Recognising its shortcomings, reviving and redirecting that power to address them is what is required today if we are to ‘make hope possible, rather than despair convincing.’

 

Is the US leading the way on disability rights once more?

I’m fascinated and inspired in equal measure by the US Disability Integration Act (DIA), currently making its way through the US Senate and Congress and enjoying high level political support from among others Democratic Party Presidential nominee Hillary Clinton.

It has many similarities to the LB Bill, with its core purpose being to:

‘clarify that every individual who is eligible for long-term services and supports has a Federally protected right to be meaningfully integrated into that individual’s community and receive community-based long-term services and supports’

The US has yet to ratify the UN Convention on the Rights of Persons with Disabilities, but the DIA in essence implements Article 19 of the CRPD – living independently and being included in the community.   However, the starting point with the DIA is the Americans with Disabilities Act 1990 (ADA). As the preamble to the DIA notes:

‘In enacting the Americans with Disabilities Act of 1990 (referred to in this Act as the “ADA”), Congress—

(A) recognized that “historically, society has tended to isolate and segregate individuals with disabilities, and, despite some improvements, such forms of discrimination against individuals with disabilities continue to be a serious and pervasive social problem”; and

(B) intended that the ADA assure “full participation” and “independent living” for individuals with disabilities by addressing “discrimination against individuals with disabilities [that] persists in critical areas”, including institutionalization.’

Most critically for me, the preamble goes on to say that:

‘The right to live in the community is necessary for the exercise of the civil rights that the ADA was intended to secure for all individuals with disabilities. The lack of adequate community-based services and supports has imperiled the civil rights of all individuals with disabilities, and has undermined the very promise of the ADA. It is, therefore, necessary to recognize in statute a robust and fully articulated right to community living.’

To solve this, the DIA proposes:

‘(1) to clarify and strengthen the ADA’s integration mandate in a manner that accelerates State compliance;

(2) to clarify that every individual who is eligible for long-term services and supports has a Federally protected right to be meaningfully integrated into that individual’s community and receive community-based long-term services and supports;

(3) to ensure that States provide long-term services and supports to individuals with disabilities in a manner that allows individuals with disabilities to live in the most integrated setting, including the individual’s own home, have maximum control over their services and supports, and ensure that long-term services and supports are provided in a manner that allows individuals with disabilities to lead an independent life;’

Five years after President George Bush Snr signed the ADA into law – and 14 years before the UK ratified the UNCRPD – the UK introduced the first Disability Discrimination Act (DDA) 1995.   Flawed though that first Act was, it signaled a major breakthrough for those who had campaigned for ‘full civil rights for disabled people’ just as the ADA had done in the US (and other similar law such as the Australia DDA had elsewhere).  In doing so it suggested a major political and cultural shift regarding the principles and intention of public policy regarding disabled people.

In the subsequent decade, many of the original gaps in the DDA were closed – all employers were brought within its scope, as was education, transport, housing and public functions. An enforcement body was established. The 2005 Disability Discrimination Act included a proactive duty on public bodies to eliminate discrimination and to promote equality.   In 2010, the Disability Discrimination Act was largely incorporated into the Equality Act 2010, which included a Public Sector Equality Duty.

Yet, while it is true that government is required to comply with equality law (and the European Convention on Human Rights) when making new laws, it has never felt to me that the fundamental principles of disability rights – that people have a right to independent living, to inclusion and to participate fully in all spheres of life without discrimination – have been the starting point when it comes to designing policy and legislation regarding the financial or practical supports that some disabled people require to make those rights a lived reality.  In fact, there is evidence that these principles have been rejected outright.

The Law Commission, in considering options for legislation that came to shape the Care Act 2014 responded to proposals to incorporate Article 19 of the CRPD into the Act as follows:

‘We agree that a principle based on an assumption of home-based living would not be suitable to be included as a principle in the statute. The key issue should be the person’s wishes and feelings, and in effect this principle could skew choice in one particular direction’

In effect the Law Commission advised the government to ignore the requirements of international law to which it had only a few years earlier agreed to be bound. Hence the ‘well-being’ principles in the Care Act fail sufficiently to reflect the principles of independent living, inclusion and the right to full participation that form the foundation stones of the UNCRPD and disability rights more generally.

While I am not bang up to date on education law, I expect the same can be said for supports for disabled children, which remain predicated on ‘meeting needs’ not on supporting full participation in inclusive educational life.   That is to say, the ‘promise’ of the DDA has not embedded itself in the way that other policy and legislation of instrumental importance to disabled people’s human and civil rights are conceived of or designed. With some notable exceptions, such as Access to Work or Disabled Students Allowance, much of the web of financial and practical assistance on offer to disabled people remains rooted in a ‘needs based’ rather than rights-based model of disability.

The Care Act is as a consequence insufficient to meet the requirements of the UNCRPD in statute and – because it includes nothing to ensure sufficient energy and resources are committed to supporting people to live independently in the community – in practice also, especially in the context of the massive cuts in local council budgets. For example, it includes no equivalent obligation to that proposed in the DIA:

‘to establish a comprehensive State planning requirement that includes enforceable, measurable objectives that are designed to transition individuals with all types of disabilities at all ages out of institutions and into the most integrated setting’

What fascinates me so much about the Disability Integration Bill in the US is not just its specific provisions but that it does take as its starting point the promise of full civil rights in the ADA.  As such its purpose is to extend civil rights to those denied them by virtue of their institutionalisation via steps to ensure adequacy of support for community based living.

In Britian, the narrative included in the preamble to the DIA would go something like this:

‘In enacting the Disability Discrimination Acts of 1995 and 2005 and their successor the Equality Act 2010 Parliament intended that the law ensured full participation and inclusion for disabled people.   The right to live in the community is necessary to the exercise of civil rights that our body of equality law is intended to secure for all individuals. Moreover, the UK as a Party to the United Nations Convention on the Rights of Persons with Disabilities has undertaken to ensure that disabled people can live independently to be fully included in the community.   The lack of adequate community based services and supports has and continues to imperil the human and civil rights of all disabled people and has undermined the very promise of our equality law.   While containing important and valuable provisions, the Care Act 2014 fails to fully accord with these principles or to provide sufficiently robust guarantees that they will be ensured in practice. It is therefore necessary to recognise in statute a robust and fully articulated right to community living.’

In practice this would see resources committed to social care explicitly directed towards the end of securing and supporting full civil and human rights for disabled people.   In doing so, the current major shortcomings of public policy and spending on care and support would be fully revealed (a reason it probably won’t happen soon). Applying this same provision to support for disabled children and young people both in education and wider life would have similar implications (and may be similarly resisted).

But…. while the DDA was undoubtedly the achievement of British disability campaigners and their allies in Parliament, the ADA had a massive impact in Britain and internationally. It was not only a legal template, it was even more so a political and cultural template for how States should treat their disabled citizens.   The US has arrived at a point where – even if the DIA does not become law this time around – it recognizes that the inadequacies of public services deny many of its citizens their civil rights and that this is a sufficient basis to legislate for, in effect, progressive social rights.

Just as the ADA changed the world, I hope the DIA gives us reasons to be optimistic once again.

 

 

Corbyn will let disabled people down – he should stand aside

Many disabled people and particularly those reliant upon out of work disability benefits to survive have felt largely abandoned by a political class that has spent the last decade increasingly locking horns over ‘welfare reform.’ Whatever the differences in policy, the narrative employed by both sides painted unemployment as a pathology, to be resolved only by making life ‘tougher’ for those receiving benefits.   This has led to tighter eligibility criteria, arbitrary and intrusive testing, a sanctions regime that can leave people literally facing destitution.  It has been coupled with widespread stigmatization, gradually turning those receiving or seeking disability benefits into a ‘suspect community’. Labour’s strong record on disability rights after 1997 has to a large extent been overshadowed by it being seen as both an architect of reforms such as the Work Capability Assessment and as being weak in opposing the worse excesses of the government’s since 2010. While ‘getting tough on welfare’ can lead to very different policy solutions, this rhetoric was sufficient to alienate and lose the support of many disabled people as Rachel Reeves found to her cost. This was especially so when any wider narrative of rights and equality seemed to be have been forgotten while at the same time eye-watering spending cuts and reforms in areas such as social care, the Independent Living Fund, housing benefit and Disability Living Allowance meant the world was beginning to close in on people from all sides.

It was around this time that disability activists, finding common cause with other anti austerity campaigners, acting in new networks such as the Wow petition, Spartacus campaign or Disabled People Against the Cuts, began to find themselves courted by the likes of John McDonnell MP, Michael Meacher MP and Jeremy Corbyn MP.   Here were backbench politicians of the left who stood against austerity and who stood up for disabled people, who would attend memorials for ‘10000’ who had allegedly lost their lives through welfare reform and who called for the holy grail: a cumulative impact assessment. It’s perhaps no surprise then that following the 2015 general election many of these same campaigners swung behind Jeremy Corbyn in the Labour leadership election.   Nor is it a surprise that – with no other politicians evidently courting their votes – many of these campaigners appear to be opposed to the actions of 172 MPs in seeking to dethrone Corbyn today.

But Corbyn and the few supporters he has left among the Parliamentary Labour Party are never going to resolve the dire situation already faced by many disabled people and which, post the EU Referendum looks set only to get worse.

Jeremy Corbyn is not a leader. He lacks the qualities a modern political leader requires: to unite his own party, to frame debates, to reach beyond your own base and speak to the country, to build new constituencies of support, to draw in swing voters, to negotiate and to be pragmatic.   For these reasons and because of his politics he cannot and will not command support in a general election sufficient for his principles to make a scrap of real difference to people’s lives.   And because he cannot do so, he also cannot lead a viable, effective opposition, for opposition only counts when a viable, popular alternative is on offer.

Corbyn might sometimes speak out about disabled people’s plight, but in doing so the effect is only to reinforce his own sense of righteousness and that of his supporters, not to reshape policy or opinion.   As leader, his effect on disability rights in Parliament has been no greater than that of a backbench MP.  The one substantial shift in disability related government policy during Corbyn’s time as leader – the government’s u-turn on further cuts to Disability Living Allowance – was a product of a Conservative backbench revolt.  The only proactive initiative launched under his leadership (led by Debbie Abrahams) has been a listening exercise, exactly in the vein of that launched by Liam Byrne in 2012.

But it is not just Corbyn’s inadequacy as a political leader that I find so concerning. Despite his public statements I think it’s clear that Corbyn was lukewarm at best about staying in the EU. His past voting records confirms him as a Eurosceptic and his appearance on the Sky News debate before the referendum revealed his capacity to find fault with the EU far more easily than he could make the case for the UK staying in. Firmly in the ‘Lexit’ camp – the fantasy of building a socialist nirvana outside the ‘neoliberal’ straightjacket of the EU – he was the opposite side of the Boris Johnson ‘leave but really want to remain’ coin, the only problem being that Boris proved himself capable of winning an argument he didn’t believe in.   The extraordinary statement from Corbyn’s team in the immediate aftermath of the result that ‘It shows Jeremy is in tune with the British people’ spoke volumes. Stories emerging from inside Labour HQ suggest strongly that his team refused to cooperate with the Labour In campaign.

No-one could surely have imagined that the UK leaving the EU would prove positive for the poorest and most marginalized in our society, including a great many disabled people.   The UK is set, for as long as it now exists, to be governed by a government to the right of David Cameron’s. Rights will be dismantled. Jobs lost. Public services cut to the bone. Welfare benefits slashed. The planned EU wide steps forward in accessibility may never benefit disabled people in the UK. £billions of EU social, structural and research funding will no longer come to the benefit of UK disabled people.   How can a man who claims to be concerned about human rights and inequality have done so little to challenge an outcome so singularly calamitous for human rights and inequality?

The wider political class may have appeared to have abandoned disabled people – and particularly those who require financial and practical support to live their lives. But Corbyn’s embrace was, is and continues to be a self-serving one amounting to little more than virtue signaling.   He has neither the policies nor the leadership skills to bring meaningful change to disabled people’s lives.   What’s more, having helped the UK walk away from social democratic Europe, he and his allies seem prepared to destroy the only other viable domestic political vehicle for advancing disabled people’s rights – the Labour Party – in their thirst for power.

There is much to be done to rebuild a progressive disability rights agenda. It requires alternatives to welfare reform and austerity. It demands politicians engage and listen and rethink.   But it also requires good policies, political leadership, public support, effective opposition and electoral success.   Corbyn offers none of this. He should stand aside for somebody who does.

Conservative leadership contenders – where do they stand on human rights?

It’s worth reminding ourselves that this contest will conclude will be, for a time at least, the next Prime Minister of the United Kingdom.  The Conservatives won the last election on a manifesto commitment to replace the Human Rights Act with a British Bill of Rights.  This 2016 Queen’s Speech (re)announced the government’s intention to consult on its proposals for such a Bill.   So where might the various leadership contenders stand in this question?

Theresa May (current odds 4/6 William Hill, 10/11 Ladbrokes)

May famously cited a case whereby a court had allegedly upheld a man’s right to private and family life on the basis of his owning a cat in arguing for the UK to leave the ECHR.  As Home Secretary she has battled on various fronts against human rights, including most notably in relation to the deportation of Abu Qatada, though in the end she did secure action on torture by Lebanon that allowed Qatada to be successfully deported without breaching the Convention.  During the EU Referendum campaign she argued that Britain should stay in the EU but leave the ECHR .  However, in launching her leadership campaign this morning she said “there is no parliamentary support” for resiling from ECHR so she will not pursue this idea.  This does not of course take repeal of the Human Rights Act off the table.

Boris Johnson (current odds 7/2 William Hill, 4/1 Ladbrokes)

During the EU referendum campaign Johnson responded to Theresa May’s call to leave the ECHR arguing “We wrote it and actually I am a supporter of it.  I think it was one of the great things we gave to Europe. It was under Winston Churchill, it was a fine idea in the post-War environment.  I am not against the European Convention or indeed the Court because it’s very important for us – the judgements of the European Court of Human Rights do not have to be applied either by the UK courts or by the UK Parliament.  The judgements of the European Court in Luxembourg do and Luxembourg is supreme  Keep the European Convention, it’s a fine thing. Get out of the EU.”

It’s worth however noting that Boris was until very recently of the view that the UK should remain in the European Union, and it is suggested may still be of that view.

Michael Gove  (current odds 10/3 William Hill, 4/1 Ladbrokes)

As Justice Secretary Gove has indicated his opposition to leaving the ECHR and signals from his department suggested that any plans for a British Bill of Rights would involve modest reforms to the Human Rights Act rather than a radical overhaul.  He also began reversing policies of his predecessor Chris Grayling in relation to access to justice and developing a programme of prison reform.

Liam Fox (28/1 William Hill, 25/1 Ladbrokes)

Previously argued for repeal of the Human Rights Act to ‘restore Parliamentary sovereignty’

Andrea Leadsome (6/1 William Hill, 12/1 Ladbrokes)

Unclear, but her ‘They work for you’ entry says that she has ‘generally voted against laws that promote equality and human rights’.

Stephen Crabb (16/1 William Hill, 16/1 Ladbrokes)

Crabb’s website says that he ‘believes in a firm but fair approach to immigration. He supports changes to the Human Rights Act to stop it being abused by illegal immigrants.’  He opposed equal marriage and first entered Parliament as an intern when working for the group The Christian Action Research and Education charity (Care) which “actively supports and encourages marriage between a man and a woman”, and once co-sponsored a conference that looked at “therapeutic approaches to same-sex attraction”.

Nicky Morgan 66/1 William Hill, 66/1 Ladbrokes

In an interview with Pink News during the EU referendum campaign Morgan said in response to being asked ‘Do you think we should remain a signatory of the European Convention on Human Rights?’

“Yes – look, we’re going to have a debate about the British Bill of Rights. The Queen’s Speech last week made it clear we are going to introduce one. All I’ll say on that is as a country we have a very long and proud tradition of respecting human rights. I think we should be looking to enhance human rights, and that’s what the British Bill of Rights will do. But what we’ve seen under the Labour Party’s Human Rights Act has been a distortion – human rights have lost credibility because of the way the HRA has worked.”

Jeremy Hunt (66/1 William Hill, 66/1 Ladbrokes)

Hunt’s position on human rights is unclear.

So, current analysis suggests that the majority of the leadership contenders, and especially those with the greatest chance of winning, do not propose to leave the ECHR.  Do not be lulled into a false sense of security though.  The UK can remain party to the Convention whilst seriously weakening its domestic application via a British Bill of Rights.  There is still a great deal to play for.

Ignore ‘project fear’ – personal health budgets are a welcome development

Several years ago I visited Baroness Jane Campbell in hospital to help draft a speech that was to be delivered on her behalf by Baroness Tanni Grey Thompson on the occasion of the launch of the Joint Committee on Human Rights inquiry report on the right to independent living.  Baroness Campbell was a member of the JCHR at the time and had spearheaded the inquiry which centred on how well UK law and policy was advancing disabled people’s right to be the authors of their own lives.

In the same ward at the time was a young man with the same condition as Jane: ‘Spinal Muscular Atrophe.’  He had had an emergency trascheotomy.  We sat and listened to his story and included it in the speech.

Prior to being admitted to hospital the young man had used direct payments from his local council to fashion a full and active life.  He had is own place to live, ran his own business and had a steady girlfriend.   But now his ‘needs’ no longer fell into the box marked ‘social care.’  His trascheotomy meant he required continuing ‘healthcare.’   However, unlike social care, direct payments were not (at the time) permitted in relation to healthcare.  He would no longer be able to direct his own support, or choose who supported him.  This would be down to the Primary Care Trust (PCT).  The PCT’s preference was for the young man to live in nursing care.  The young man’s preference was to go home and resume his life, which he was ready to do after one month of being admitted to hospital.  The resolution took six months, during which time he ‘lived’ in a high care unit, with no contact with the outside world, listening to people struggling to breathe, and quite often listening to people die.   He lost his business and his girlfriend.  The avoidable cost to the taxpayer of his elongated stay was £250,000.    The avoidable cost to him was incalculable.

That one story exemplifies why I support personal health budgets.  Where our lives pivot on continuing healthcare it must do more than just keep us alive.  It must be designed to support us to live our lives to the full.

It is also why yet again I have to call out Peter Beresford for his ongoing and utterly slippery ‘project fear’ regarding personal budgets (PB’s) and personal health budgets (PHB’s).

Peter’s main line of argument is that, as pursued by this Conservative Government PB’s and PHB’s must only exist to implement spending cuts and privatisation and hence must be rejected.  At the same time he claims to support direct payments, introduced by John Major’s Conservative Government in 1996.   However,  when this morning a person put to him that local authority direct payments were too problematic to be used for older people ‘lacking capacity’ and had ‘no place in the NHS’, rather than challenge their argument he replied ‘PBs directly undermine the universalist principles of the NHS which is why this govt likes them’.  Another person tweeted to ask whether the ‘PB question (is) separate to the Bill to set upper limits NHS treatment free at point of use ?’ to which Peter replied ‘good point sounds like policy pushing in same direction’.  The only problem being that no such Bill (or policy) exists.

In truth, personal health budgets neither herald rationing, or the involvement on non-public entities in the arena of health.

‘Universal’ healthcare does not nor has it ever meant ‘unlimited’ healthcare.  The NHS has finite resources which are already targeted.  The NHS does not charge those who benefit from its services, which is what distinguishes it from social care, but that does not mean it operates a ‘blank cheque’ policy.  In this sense, what personal health budgets offer is a degree of transparency hitherto denied about what is spent on our care and how the money is spent.  It is in all of our interests to prevent the sort of huge waste outlined in the case above and personal health budgets can help achieve that.

As for ‘privatisation’, the NHS already spends £billions procuring products and services from businesses and voluntary sector organisations, including drugs, medical equipment, food, wheelchairs, digital hearing aids, aids and equipment, nursing care, research and so on.   It frequently does so via block commissioning, having little regard to the individual needs and preferences of patients.

What PHB’s can restore- to a relatively small number of people who require continuing health care because of the complex nature of their impairments and ongoing interaction with the health system – is control over day to day life.  In keeping with the UN Convention on the Rights of Persons with Disabilities this includes control over where and with who to live, over who provides support and how they provide it, over the kinds of products one has in one’s home and so on.   In doing so PHB’s invite people to be partners, rather than simply objects, in relation to their own health and wellbeing.

In short, as with personal budgets, personal health budgets aim to expand opportunities for independent living.   I’m unclear why Peter doesn’t support them, but then he does have a book to promote……

 

 

 

 

 

 

 

 

Personal budgets can and do work. Why are some not prepared to let them?

Peter Beresford has been a consistent and vocal critic of personal budgets, as elaborated in the Care Act 2014.  This week he wrote a further familiar piece under the headline ‘Personal Budgets don’t work. So why are we ignoring the evidence’, a headline betraying his theory that there exists a conspiracy of silence among ‘the supporters of In Control’ (who he considers to be the architects of personal budgets) regarding faults in design or implementation.  To drive this point home Peter launched a volley of tweets accusing these ‘supporters’ of attacking any criticism. For example:

‘Peter Beresford ‏@BeresfordPeter  16h16 hours agoLondon, England
In Control’s supporters criticise anyone who challenges their failed model of PBs which undermined disabled pple’s’

 

Moreover, Peter appears to regard anyone disagreeing with his analysis not only as an supporter of In Control but as offering unconditional support for the government:

‘Peter Beresford ‏@BeresfordPeter  4h4 hours agoEast, England

depressing how many supporters this govt’s IL policy seems to have however disastrous it is’

Two disabled people who responded to his article to set out why they believed personal budgets had improved their lives were met with the (since deleted) tweet:

‘check out who supports this govt’s disastrous personal budget policy http://www.theguardian.com/social-care-network/2016/may/05/personal-budgets-health-care-nao-report#comments … do they support its welfare reform too?’

Nice….

A great many people value the idea of personal budgets yet express disappointment and concern about how they have been implemented, not least the corrosive effects of spending cuts, the undermining impact of welfare reform, the red-tape and bureaucracy needlessly imposed by some councils and the lack of investment in local support infrastructure such as disabled people’s user led organisations.    What they do not question though is the basic principle of finding ways to extend choice and control over support, and over life, to more disabled people.

For many, including me, their support for personal budgets can be traced back to the Number 10 Strategy Unit report ‘Promoting the Life Chances of Disabled People’ (2005), much of which was written by Dr Jenny Morris.  As Jenny reminds us in her excellent blog ‘Personal Budgets and self determination:’

‘(a key message) was that some people, or the family members supporting them, wanted more control over resources but were daunted by the responsibility of taking a direct payment and organising their own support.’

Jenny goes onto note how Life Chances proposed:

“a simplified resource allocation system, including ‘one stop’ assessment and information”, which “addresses all aspects of needs for support and/or equipment or adaptations”

–  Individuals being able to “take some or all of their budget as a cash payment and/or to have control over the budget (with support if necessary) without actually receiving the cash”

–  “self-assessment, with advice/information or advocacy support where required”

–   Each local authority area having a user-led organisation, modelled on existing Centres for Independent Living, which would provide support to disabled people to enable them to use individual budgets and direct payments.'”

 

That, I feel, remains many people’s ambition, which is why their many criticisms do not add up to an absolute rejection of personal budgets, which in policy intent at least, reflect a number of these goals or at least represent a further step towards them. It is also why outright attacks on the very idea of personal budgets and those invested in making them work, such as those made by Peter Beresford and his ‘supporters’ are met with the kind of response which Peter has encountered.

Direct payments represented a major breakthrough for the realisation of disabled people’s right to independent living and Peter correctly pinpoints factors that determined their success, such as effective and sufficiently resourced local centres for independent living (factors which appear equally determinative of the success of personal budgets in extending choice and control, however a person elects to have them expressed).  It would be good to see many more people supported to take up the opportunities they present.  But the evidence that lay behind the Life Chances report found that they were not a panacea and that pursuing only the policy of direct payments, as Peter appears to advocate* would deny opportunities for choice and control to many.  Individual/personal budgets were never intended to supplant direct payments, but to build upon them by extending their benefits to people who for one reason or another did not want to assume such responsibilities.   The acid test – whether for direct payments or other methods including individual service funds, or council managed support – is therefore whether as a consequence of the Care Act people feel able to exert greater control over their support and over their own lives, irrespective of the approach that they choose.

Far from indulging in a conspiracy of silence, organisations that have come together under the umbrella of the Independent Living Strategy Group have with the financial and technical support of In Control been monitoring implementation of choice and control under the Care Act 2014.   The first survey was carried out in 2015 and the findings published in October 2015 which can be read here.  I challenge anyone having read this report to suggest that In Control and its ‘supporters’ are engaged in a conspiracy of silence regarding the shortcomings of current implementation.

The 2016 survey has just been launched and I encourage as many people as possible to complete it.  The findings will be presented directly to Ministers in July and published in the autumn.

What distinguishes this approach from that of Peter and his allies is a desire to see the Care Act 2014 deliver on its promise by holding national and local government’s feet to the fire over implementation, rather than rejecting the policy it contains only one year after it came into force.  We want to pinpoint inconsistencies between what the law and statutory guidance requires and the experiences of people using or seeking care and support in order to improve implementation and to bring to the attention of national and local politicians the difficulties that are being encountered in the ground so that they might be addressed.  Where necessary we will explore opportunities for strategic litigation.  But we will also highlight good things where we find them, such as the decision by Hammersmith and Fulham Council to scrap charging for care services.

We also hope to  find opportunities to pick up where initiatives such as the Right to Control left off – reconnecting with the proposal in Life Chances to see integrated personal budgets – focusing on people’s whole lives, not dictated by service silos.  The forthcoming Employment, Disability and Health White Paper is one such potential opportunity, as are personal health budgets.

Despite many problems, personal budgets can and do work.  Let’s not reject them as Peter Beresford so prematurely advocates but focus instead on addressing the problems in order to realise their potential.

 

*I have asked Peter if he believes that models other than direct payments could work but have not received a reply, so apologise in advance if this misrepresents his position.

 

 

 

 

 

 

 

 

On employment support, only genuine experts need apply

It surely follows that an organisation bidding for public contracts to provide employment support to disabled people on the basis of its expertise in doing so should have an exemplary record of employing disabled people?  This would provide evidence of their belief in disabled people’s potential, their own organisation’s commitment to the goal of halving the disability employment gap and be a powerful signal both to the disabled people they support and the employers they strive to engage.   Moreover there is growing evidence of the powerful role peer support can play in successfully supporting disaled people into sustainable employment (see the forthcoming report from Disability Rights UK and the Work Foundation).

Yet as far as I am aware there is no requirement for organisations bidding to run such services to demonstrate any of the above.  Moreover, I have struggled to find information on the numbers of disabled people employed by some of the main specialist employment support providers or the role of peer support in their methodology (the subject, I hope, of a future bit of research).

We are advised that the Work Programme and Work Choice are no more where disabled people are concerned, but we await the Disability, Health and Work White Paper to discover what if anything might replace them.  This strikes me as an opportunity to secure criteria in future tender specifications to run employment programmes that give preferred contractor status to organisations with a demonstrable record of employing disabled people, especially in front line roles.

 

 

 

 

What did the person want?

In 1995, the French Counseil d’Etat ruled that ‘dwarf throwing’ (lander de nain) was incompatible with ‘ordere public’ because the persons involved compromise human dignity by allowing themselves to be used as ‘mere things.’[1] The people of restricted growth in question had contested that it was both the manner via which they made their living and furthermore that they chose to do so freely.   The case, alongside others, raises deep philosophical questions regarding the meaning and nature of human dignity and in particular the balance to be struck between individual autonomy and wider conceptions of the public good.

Fast forward to 2016 and ‘that photo’ of a man with a learning disability using a wheelchair piled high with shopping bags while his support worker talks on the phone and smokes a cigarette. Like many others I reacted with revulsion at what appeared an image of outright callous disrespect for human dignity at best, calculated abuse at worst.

But then someone gave me cause to question what I had seen, and it is that account that Mencap now appear to have concluded, following ‘an independent review’ and that of the safeguarding authorities, to be correct. Namely, the individual asked for the bags – his shopping bags – to be placed on his wheelchair table, while the support worker made the phone call.   Mencap has censured the support worker for making the call and for smoking while ‘on duty’ and we might wonder whether, had she not done so, the bags would have needed to be placed there at all. But safeguarding authorities and an independent investigator for Mencap have concluded that the image does not depict what many of us concluded it to because, in essence, the man was exercising autonomy and the support worker was respecting it.

As with the French case above, responses to the image and the actual events surrounding it (insofar as we have a reliable account) centre on the trade off between ‘objective’ and ‘subjective’ conceptions of human dignity. That is to say, between what a person deems acceptable for themself in accordance with their own will and preferences and what we deem acceptable for the person and society more generally.  But they also raise questions about our belief in the capacity of people with a learning disability to exercise autonomy sufficient to have a reliable sense of subjective dignity.

In our initial reaction to the image, how many of us stopped to consider that the man may have asked to have his shopping bags placed on his wheelchair tray? Why didn’t we? Was it because in the picture he looked swamped and uncomfortable and hence couldn’t possibly have asked to be placed in such a situation? Or was it because irrespective of his will and preferences we believe that the support worker shouldn’t have allowed such situation to occur (which we have concluded, from the photo, only took place because of her decision to stop for a cigarette and a phone call, despite the fact that we know nothing of what happened immediately before or after, or on other occasions, as far as I know).  Might it also be because the dominant framing of disability widely and learning disability more specifically has been for some time now that of victimization and abuse that we are led to interpret such images in this way?  That even if he did ask for the bags to be placed there that we do not accept that he would not have done so freely but as a result of fear or pressure?

In many ways we might take heart from widespread reaction to the photograph. Isn’t it positive that an objective conception of dignity exists sufficient for people to be alarmed by an image such as this one and to demand action? Certainly in many cases of disability hate crime there have been reports of passive bystanders who could have intervened but who chose not to or who became complicit by, for example, watching and laughing as a gang caused a man with learning difficulties to drown at Lakeside Shopping Centre.   We might also be acting from an instinctive sense that there exists a power imbalance – that as a result of both the person’s impairment and their dependence on the support worker and others the person is limited in their power to exercise free will. This might arguably have helped inform our interpretation of the image.  Conversely the image reinforced that interpretation: here was a person with a learning disability being ‘done to.’   It also seems to be why many still continue to feel that harm was done and that justice has not been served in Mencap’s response: isn’t the man’s reported perspective a little too convenient and how can we trust it, coming as it does from Mencap itself?

Alternatively our reaction might in reality be another case of what was once described to me as ‘malevolent benevolence.’ While we would like to believe it came from a place of kindness and concern, what lay beneath is our prejudicial view that people with a learning disability lack the capacity to exercise choice and control, especially where we might take issue with a persons choices as here. Here, objective conceptions of dignity continue to trump subjective ones: the desire to protect people with a learning disability from themselves and others trumps our commitment to respect people’s will and preferences.

Isn’t it precisely such denial of voice and choice in the name of protection that has placed and which continues to place so many people with a learning disability at risk? It underpins institutionalization and restrictive social work practice in areas such as personal relationships or the opportunity for people to be parents.   It is the basis for so-called ‘diagnostic overshadowing’ by medical professionals which is responsible for avoidable ill-health and mortality.   It helps explain the institutional failure of the criminal justice system to respond to disability related harassment and hate crime.

Via Twitter a colleague said to me of Mencap’s decision: ‘I’m just worried about the signal this sends to society at large’. But I think that unless there is evidence or indication of harm (and this image did of course appear to indicate harm), that we should be equally worried about sending a signal that a person’s will and preferences should be ignored and a support worker punished for respecting them.   By prioritizing objective conceptions of dignity over subjective ones, don’t we just perpetuate the myth of ‘protection’ and the denial of choice and control? Don’t we encourage people not to listen and help prevent people with a learning disability from being heard?

While I understand that they have a duty of care both to the man concerned and to a member of staff, I think that Mencap’s statement explaining the decision has left too many questions unanswered. I expect Mencap want to put the whole incident to bed now. But a brave organization will see it as an opportunity to open up a debate with the public about the attitudes, behaviours and practices that this event raises for them as an organization that is dominant in the life of people with a learning disability, for those commissioning, delivering and inspecting services, for people with a learning disability and their families and for society at large.

And the rest of us, however professed our commitment to the human rights of people with a learning disability, will always remember to ask: what did the person want?

[1]Conseil d’Etat (1995) req nos 136-727 (Commune Du Morsang-Sur-Orge and 143-578 Ville D’Aix-en-Province