The Human Rights Act – a pawn in the EU referendum game

Some legal experts believe the non-appearance of the Bill of Rights consultation is sign of the inability of officials and Ministers to work out how to achieve their professed policy aims.  Others are calling time on the Tories ‘attack on human rights’, suggesting both that the policy aims are now incredibly modest while the price of pursuing them, especially in the context of a ever more federalised UK, too high.

Personally I believe the decision on timing – and content – of the consultation is a matter solely of political strategy related to one issue and one issue only: the referendum on the UK’s membership of the European Union.   The question that political strategists in Number 10 will be asking is how can the content and launch of this consultation exact optimum impact in relation to ensuring the UK remains in the EU and/or conversely how can anything that might detract from that goal be avoided?

A major clue to this was the somewhat surprising shift in focus early in the new year from the European Convention and Court of Human Rights to the Charter of Fundamental Rights of the European Union and the European Court of Justice.  A Bill of Rights would now, we were told, restore UK sovereignty by clarifying the non-applicability of the Charter to domestic UK law.

As with Cameron’s current negotiations in Brussels, it is clearly hoped that by being seen to wrest powers back from ‘Europe’ that the Prime Minister can persuade the voting public that we are better off in a reformed European Union than outside of it.   Given most of the media and no doubt large swathes of the public draw no distinction between the institutions of the European Union and those of the Council of Europe, anything that is seen to be giving two fingers to Europe might be deemed beneficial.  In this context, simply promising a Bill of Rights that professes to stop Europe from telling us that we can’t deport terrorists, that we must give our prisoners the right to vote or that we can’t decide who comes in and out of our country and so on all forms part of the ‘retail offer’ designed to win over sceptical voters to the ‘stay’ campaign.   As with Chris Grayling’s paper of October 2014, it matters little how ‘legally literate’ such proposals are, because legal accuracy really matters not one jot.  What matters is political advantage in relation to communicating a policy objective which the proposals themselves have little or any bearing.

But I also find this logic curious as a matter of political strategy. Surely lobbing proposals into the public realm ahead of the EU referendum that have the power to reenforce or potentially even drive people towards Euroscepticism by reminding them of all the awful things that Europe allegedly forces us to do risks being an entirely avoidable own goal?   This could explain why Gove appears to be playing the proposals down, offering vague promises that the consultation will appear ‘soon.’  Perhaps recent focus groups have suggested that all this talk of European human rights judges makes them more likely to vote leave than stay?

Hence there seems a possibility that we may only see proposals regarding a Bill of Rights before the referendum if (a) Cameron’s current negotiations on EU reform fail to deliver a shift in political support and voter intention sufficient to offer confidence of a majority vote to ‘stay’ in June and (b) polling suggests that publishing proposals will help win some much needed support and/or (c) the consultation would not hand votes to the leave campaign.

If this is the calculation – and I’d bet it is – then a further question emerges: if the consultation doesn’t appear before the referendum, what will happen after the referendum?  Will they appear at all, or die a death as Ian Dunt – prematurely in my view – has predicted?

If the UK stays in the EU, then what would it offer to the legacy of an outgoing Prime Minister having not only kept the Union together but kept the UK in the European Union to start an avoidable battle pitched against both?   If Britain leaves, then it seems likely Cameron would be forced to step down earlier than planned and the future of the UK’s human rights laws will be in the hands of Prime Minister Johnson, Osborne, Gove or an as yet unknown quantity.  Would Euroscepticism have been satiated sufficient to leave the HRA and the ECHR alone?

As for the likely proposals themselves – insofar as we have read about them –  I would caution against regarding them as modest simply because they no longer include withdrawing from the ECHR.  As a package, and in the context of wider reforms, they potentially mark further erosion of judicial power, executive accountability and the scope of rights protection.  By playing them down as modest or by framing it as largely technocratic (as was the strategy over judicial review for example) their constitutional significance and their impact for people’s everyday lives risks being overlooked.

Whatever the outcome though, it seems that, for now at least, the fortunes of the Human Rights Act rest almost entirely with the political strategists hoping to keep the UK in the European Union.

UPDATE 8 February 2016

Reports over the weekend suggest that a measure to ‘restore Parliamentary Sovereignty’ is a deal-sealer in winning the support of Boris Johnson to back the ‘stay’ campaign.  While this focuses on supremacy of the Supreme Court over the European Court of Justice rather than the European Court of Human Rights, it seems likely, given the Justice Secretary attributed the delay in the Bill of Rights consultation to the Prime Minister’s ask that this idea be included, that it will be included in the overall Bill of Rights ‘package’.  Moreover, it now seems probable that we could see this in a matter of days rather than months, and before the close of the current negotiations, in order to appease Boris.   However, Tim Shipman of the Sunday Times yesterday tweeted that:

‘Dave’s “rabbit” on parliamentary sovereignty not impressing Gove or Boris. “Rabbit will be dead on arrival”‘

Others have pointed out the irony of legislating to hand power to the courts to determine matters of Parliamentary Sovereignty, but as I say above, legal literacy is not the name of the game here.














Farewell then, work programme. Hello work and health programme

Thank you Rich Watts for perusing the Spending Review and highlighting passages regarding the Department for Work and Pensions.  The devil as always is in the detail, but for now I’d rather remain positive about two announcements in particular:

  • a real terms increase in Access to Work funding to help 25000 more disabled people and people with health conditions return to, and remain in, work
  • a new Work and Health Programme replacing the Work Programme and Work Choice which will provide specialist support for the long-term unemployed and claimants with health conditions and disabilities

Regarding the latter, the review also announced:

  • over £115 million of funding for the Joint Work and Health Unit, including at least £40 million for a health and work innovation fund, to pilot new ways to join up across the health and employment systems

In our paper ‘Taking Control of Employment Support’ Liz Sayce and I called for the Work Programme and Work Choice to be replaced by a locally led, personalised approach which put employers and disabled people in the driving seat as co-commissioners of support.   It was recently reported that the State of Vermont in the USA had adopted such a approach with huge success in relation to the employment opportunities of people with learning disabilities.  I understand DWP has since been piloting the use of personal budgets in relation to employment support and look forward to the results.It will though be important not just to look across employment and health, but also at the role of wider support infrastructure, including social services and community support.

The yawning gap as ever is skills: inexplicably it never features prominently in relation to disability employment policies, despite (a) disabled people being twice as likely to have no formal qualifications and (b) evidence of the huge economic benefits such investment would bring.  Hopefully this is something the new unit will major on.

The government’s welcome goal of halving the disability employment gap echoes one of the key strategic objectives of the now defunct Disability Rights Commission.  By focusing on the gap rather than the overall employment rate of disabled people, the government has provided the opportunity to focus on the nature and causes of employer discrimination and labour market disadvantage after a long period during which policy has centred almost wholly on individual behaviour and motivations.  This would fit nicely with other policies, such as the National Living Wage, which seek to (pre)distribute responsibilities from the State to employers.  What better way for the current government to remind people that it was the last Conservative government that introduced the Disability Discrimination Act 20 years ago this year than by re-asserting employer obligations not to discriminate against disabled people, just as David Cameron did recently with respect to race discrimination?





20 years on from the DDA – what are the key challenges today?

Have just read through the latest ‘How Fair is Britain?’ report from the Equality and Human Rights Commission, which although somewhat selective in its focus highlights a number of  key challenges for disability rights:


  • Evidence suggests that the 2012 Paralympic Games did not improve attitudes towards disabled people and that many continued to experience both unconscious bias and open hostility

Children and education

  • Educational attainment of children with SEN has risen since 2010, but attainment among children without SEN rose faster, widening the gap.
  • Disabled children are more likely to be bullied
  • Children with SEN are more likely to be excluded from school
  • In 2013 disabled young people are less likely to be in employment, education or training, though the gap has narrowed since 2008

Employment and incomes

  • The unemployment rate of disabled people has risen since the last report in 2010, despite reports of increased numbers of disabled people moving into paid employment
  • Disabled people experienced a greater decline in average pay than other groups between 2010 and 2015
  • For disabled people above the official poverty line, material deprivation increased as did the poverty gap between disabled and non disabled people of working age


  • In England, the proportion of disabled people who reported bad or very bad health increased between 2008 and 2012, whereas there was a reduction for non- disabled people.

Independent living

  • People with learning disabilities and/or autism were placed in inappropriate settings for too long and a long distance from family and home owing to a lack of good-quality alternatives in the local community
  • There has been insufficient action to eliminate inhuman and degrading treatment in such facilities

In celebrating the passing of the DDA, it’s the message that matters

The significance of the Disability Discrimination Act was and remains largely symbolic. Saying this is not to denigrate its actual effect as a piece of law, which is frequently overlooked. Rather is it to say that in marking its passing and understanding its relevance and importance two decades on, our attention should be drawn to the message that its passing reflected and sent to society regarding the status of disabled people, more so than its direct effect.

Fundamentally the message was this: disabled people deserve equal rights to participation, not society’s charity, and what stands in the way are socially constructed barriers that must be removed, not disabled people’s bodies or minds.

It is this message that matters – that we need to remind ourselves of – today.

From the original Disability Discrimination Act, which was narrow in scope and weak in enforcement, the decade to 2005 witnessed huge policy and legislative advances in relation to the rights of disabled people, all of which stemmed from that core message.   Yet it sometimes feels today that people view this period as having been full of false hope and potentially having paved the way for the damaging reforms and public spending reductions we are witnessing today.

Certainly many of these advances – anti-discrimination law, direct payments, individual budgets – were driven as much if not more by economic policy as any concern for human rights. This is the same broad economic policy that promoted the transition from ‘passive’ to ‘active’ welfare states and the increased marketization of public services across the European Union and developed nations.

Yet there was at the same time always what I have called previously a ‘structural deficit’ in the evolution of disability rights in Britain, reflecting the historic division between those who focused primarily on securing a ‘disability income’ and those engaged in wider battles for inclusion – a division that remains today.

While the message of disability rights activists drove the development of equality law, it failed to penetrate the conception of disability that had guided developments in social security and social care since the Second World War:

  • While disability rights focuses on socially constructed barriers, social security and social care has focused on the impact of impairments and health conditions on functioning.
  • Disability rights regards the notion that impairments or health conditions predict what an individual can be or do as a form or prejudice. Social security and social care have typically required people to demonstrate that their impairment or health condition predicts what they are unable to be or do as a condition of entitlement.
  • Disability rights seeks to generate higher expectations among people with impairments and health conditions and wider society regarding what is possible. Social security and social care typically encourage a lowering of expectation, for it is only by demonstrating a lack of productive potential that people can secure and maintain entitlements.

This tension plays out in deeply problematic ways. In relation to employment and social security for example, disability rights has been concerned with the right to work and focused on removing labour market barriers including prejudice and discrimination, while welfare reform has concerned itself with extending the obligation to work, distinguishing on the basis of abstract tests of functional capacity who should or should not be the object of conditionality. This has resulted in disability campaigners appearing simultaneously to campaign for the right to work by challenging prejudicial assumptions about their employability, while at the same time seeking to safeguard people against expectations to work, based on blanket assertions regarding the impact of impairments and health conditions on their capabilities.

While the energy behind the DDA and disability rights more generally had been on the slide since the closure of the Disability Rights Commission in 2007, it was the emergency budget following the election of the coalition government in 2010 that seemed to mark the beginning of the end of the very pursuit of disability rights itself, for it was here that the core message itself was largely abandoned.

State charity, not equal rights and inclusion have been the focus of campaigns, with the impact of impairments and health conditions on functioning the principal battleground.   Where equality and human rights law and standards have been invoked it is to defend state charity – the very idea disability rights activists once opposed and a major reason why such laws and standards now exist. The language and images of vulnerability and dependency have been rehabilitated to fight these battles, where once disabled people wore t-shirts with the slogan ‘piss on pity.’ Campaigners promote low expectations to shield people from punitive welfare reforms.

Of course, people cannot participate equally when they lack of the resources to leave their home or do not know whether they will be able to afford their next meal.   It is perfectly understandable when faced with such unprecedented cuts that people have prioritized challenging them.   I am always reminded of what Albie Sachs has said of the inclusion of economic and social rights in the South African Constitution: ‘it would have been ironical indeed if all the victory over Apartheid had secured was the right of people to curse the government freely with their last breath.’   Human rights are indivisible and interdependent. Disability rights makes no sense without a focus on both civil and political rights and economic and social rights.  But this indivisibility equally means that the price of protecting and securing material wellbeing must not be the loss of dignity, freedom and social status. This is I believe where the message that drove disability rights campaigners in the 1980s and 1990s can inform and reinvigorate campaigners again today.

How can the message behind the DDA shape today’s campaigns? Campaigners could reframe their demands, not as challenging ‘spending cuts’ or as opposing welfare reform – both of which act to reinforce the framing of those who wish to continue cutting spending to the bone – but as pursuing investment of public resources in the support and opportunities that enable disabled people to contribute to society.

This should promote at least as much focus on how public resources are invested as on how much money is spent: on the case for investment, on how resources should be targeted, on what is required of people to demonstrate eligibility, on who is in control of the money and how value for money can be demonstrated.

Just as campaigners advanced a model of anti discrimination legislation in the early 1990’s, so now campaigners might advance a new way to invest public resources effectively and in a way that realigns to the pursuit of equal rights and inclusion – as enabling supports rather than allowing them to be cast as inherently undesirable and ideally avoidable areas of ‘welfare spending.’

The DDA itself did not change the world, but it was a watershed moment in terms of how the world was coming to view the status and rights of disabled people – one which has since begun to spread across the globe.   The best way to celebrate this important anniversary is to recall, embrace and be guided once again by the message that lay behind it.

No, Disability Hate Crime has not gone up by 25% since last year…..

The latest figures have come out from the Home Office on hate crime and as usual the facts are not getting in the way of a sensational headline.

In 2014-15 there were 25% more disability hate crimes reported to and recorded by the police than in 2013-14.   In numbers this was a rise from 2006 disability hate crimes recorded by the police in 2013-14 to 2508 in 2014-15.

There has been an upward trend in recorded disability hate crime since the late 2000s when it first began to be systematically recorded.  At the same time, the Crime Survey for England and Wales estimates that overall incidence of disability hate crime has remained at an average of 70,000 incidents per year since 2007/8.  That is to say, recorded disability hate crime is rising, but overall incidence is not.  It is likely that this reflects a wider trend noted in the Home Office report:

‘The Office for National Statistics (ONS) has attributed recent increases in some categories of police recorded crime to improvements in police recording rather than a real increase in offences. For example, there was a 23 per cent increase in the overall number of police recorded violence against the person offences between 2013/14 and 2014/15 while the Crime Survey for England and Wales estimates for violent crime showed no statistically significant change in this period.’

It should be noted that the Home Office report does not attribute all of the rise in recorded disability hate crime to improved police performance, noting that:

‘These could be genuine increases in hate crimes or increases in the numbers of victims coming forward to report a hate crime.’

However, the figures published today do not confirm a 25% rise in disability hate crimes. More likely for the most part they represent welcome but extremely modest progress in the responsiveness of the police.  Those who genuinely care about tackling disability hate crime will look beyond the ‘25%’ figure and recognise that the real story here is that despite this progress 96.5% of the 70,000 incidents a year continue to go unreported and unrecorded.

From independence to interdependence – the case for reframing disability rights

This week I attended a fascinating presentation by the Framework’s Institute on the influence of ‘frames’ on public policy and the importance of framing in achieving social change.  I’ve been working with these ideas for a few years now in respect of seeking to change the public narrative around human rights, and I recently wrote about it in the context of disability in a blogpost on why we should abandon the language of vulnerability.

I’m particularly interested in applying these approaches in the context of disabled people’s right to independent living.  Doing so requires some serious resources (hint hint to any funders that might happen upon this blogpost) and it takes time and patience.  But I think the rewards could be considerable because I believe progress on independent living has stalled and that the framing of independent living that led to progress in the 90s and 2000s is partly responsible for that.

As Professor Gerard Quinn has noted, disability rights and independent living in particular is proof that individual freedom relies to a considerable extent on social solidarity.  That is to say, the resources that some disabled people require to achieve the support necessary to realise their rights require society as a whole to commit to investing in them.  Achieving such commitment demands a society which prizes values such as universal rights and human welfare.  It also requires a society that is prepared to recognise how structures create and perpetuate disadvantage and one which is committed to addressing such disadvantage.

Yet we seem increasingly to live in a society which prizes individualism over any notion of common goods, which regards social and economic disadvantage to be the result of individual choices rather than structural barriers, and which is less and less willing to commit public resources to social welfare, save to care for ‘the most vulnerable.’

These dominant values undermine the ability of disability rights campaigners to achieve their goals in two ways. Firstly, because they contribute to the idea that certain areas of public spending are intrinsically undesirable. Hence social security cannot be discussed outside the frame of ‘welfare reform’, the sole objective which is to reduce the numbers receiving assistance from the State.  Second, because the only way to maintain legitimacy in this welfare frame and to avoid the axe falling is to plead vulnerability – a lack of agency and productive value.

These are the things in what the Frameworks Institute refers to as ‘the swamp’ – the dominant public values and frames which we must carefully navigate in our journey towards our goals.

And as I sat and listened yesterday it occurred to me that it was not only some welfare campaigners emphasising vulnerability who are falling pray to what lurks in the swamp.  Those who have campaigned for independent living have often placed most emphasis on individual autonomy and the idea of the ‘rational actor’ to pursue reforms such as direct payments and individual budgets.  This makes sense as a vehicle for levering power away from professionals and public bodies.  But it draws on the same values of individualism and the notion that we alone are responsible for our lot in life that underpins declining public support for spending on social security and public services.

Moreover, I fear it remains deeply challenging conceptually and practically for many people, including policy makers, to reconcile the idea of relying on State assistance while ‘living independently.’  This is especially so when the very idea of ‘dependency’ is regarded as being as great a moral evil as hunger.  Hence we see progress on ‘choice and control’ in the Care Act 2014, yet fewer and fewer people can access any support.   We see Disability Living Allowance replaced with the Personal Independence Payment, with an explicit policy objective of decreasing the number of claimants by 20%.

What I say here should not be misconstrued as an argument against the promotion of choice and control, direct payments, personal budgets and the like.  I am also aware that campaigners will say that the independent living movement itself was rooted in communitarian vision.  Yet the very concept of independence and the manner in which these ideas have found currency in public policy over the past 20 years seem to me to have helped reenforce the idealised notion of personal freedom as the atomised individual, unencumbered by any ties to his or her community – independence as self-sufficiency.

Of course this notion of freedom is a fiction for all of us.  We lead interdependent lives.  Our freedoms rely on functioning infrastructure, laws and regulations and common standards of behaviour.  Cognitive science, psychiatry and philosophy all now point towards the idea of autonomy as ‘relational’ and question the very concept of free will.  No man or woman is an island.

It strikes me that for ‘independent living’ to have a future, it needs to be recast as community living, or such like: a reframing that captures the notion of interdependence, of relationships and recriprocity, of investment and return.  It requires a compelling narrative that persuasively conveys why an investment in disabled people’s right to choice, control and participation is an investment not just in individual rights but in the common good.

I hope I’ll find the opportunity to take this thinking forward and I really welcome others thoughts and to hear from anyone interested in being involved.


Equal responsibilities, unequal rights – on the proposed Access to Work award cap

Just been perusing DWP’s equality analysis accompanying proposals to impose a cost cap on Access to Work awards.  In it they say:

‘It is unusual for Government to deliver uncapped support, particularly in the current economic climate. Although some people will argue for a “rights first” approach, a shift towards lower average awards would allow us to support more customers (see table D). Supporting more customers and meeting the hypothesised significant unmet need – particularly of under–represented groups including those with hidden impairments such as mental health conditions and learning disabilities, is something that many key stakeholders have strongly advocated.’

It’s not entirely clear what is meant here by a ‘rights first’ approach but it seems to be saying that some argue that the person’s award should be commensurate with the cost of securing them the support they require to perform a job on an equal basis with others.  In rejecting that principle, DWP is also therefore saying that awards should not in all cases be commensurate with ensuring that a person can perform a job on an equal basis with others, and as such this policy openly holds the potential to disadvantage some disabled people in the labour market (in particular those requiring communications support such as British Sign Language interpretation).

Yet at the same time, this lack of access to sufficient support – a direct result of DWP policy – would not presently be taken into account when determining whether a person was ‘capable’ of work.  It is a prime example of how the Work Capability Assessment is divorced from the realities of what shapes and sustains labour market participation, despite both policies emanating from the same government department.

A government that is dis-investing in the infrastructure of rights and opportunity cannot demand the responsibilities that such disinvestment makes unachievable.  If the government is serious about halving the disability employment gap, it will find the extra money to invest in Access to Work, not place a cap on opportunity.

Dementia, human rights and the social model of disability

A very interesting report was published by the Mental Health Foundation last week, exploring whether the social model of disability provided fresh perspectives on how public policy and society at large might respond to the growing numbers of people living with dementia.

Dementia is certainly an impairment and those who experience it encounter a range of social and economic forces that risk their marginalisation and exclusion in our society.  These bear all the hallmarks of the struggles of the Disabled People’s Movement: against the dominance of medicine (including psychiatry) to the exclusion of tackling socially constructed barriers, to not have one’s life be regarded as a tragedy by others, to live free from stigma and prejudice, to have equal access to mainstream goods and services, to be able to contribute socially and economically, to live free from poverty, to maintain one’s right to make decisions, to not be reduced to an object of care but to be respected as an equal citizen, to escape institutionalisation and forced treatment and to live freely in the community with choices equal to others.

In sum, it is the re-balancing from a deficit based model (the person’s situation is wholly a tragic product of their impairment, which should ideally be fixed) to a rights-based model (the person has inalienable human rights and it is society’s obligation to strive to uphold them, irrespective of the impact of their impairment).  As with disability rights more widely, this re-balancing has profound implications for how society is re-organised and for how individuals with dementia regard their own situation and life opportunities.

The report has a tendency towards an exceptional account of the limitations of the social model of disability as regards the life situation of people with dementia.   The report notes how:

‘Given that the majority of people with dementia frame dementia as an illness or disease (with some rejecting the concept of it being a disability because of the negative connotations this can imply), a more nuanced and less radical model of disability may be more appropriate to engage.  It can certainly be argued that the lived experience of people with dementia is usually articulated as the impairment itself causing a disability. Therefore, a disabling factor may be intrinsic to the condition. In these instances, the social model needs to take account not only of the external barriers, but also of the social and psychological obstacles that exclude or restrict full participation in society. Lived experience, as well as societal responses, may also vary significantly depending on the severity, perceived ‘stages’, and the type of dementia.’

In fact research published by the Department for Work and Pensions found that 52% of people with rights under the (then) Disability Disability Discrimination Act did not identify as a disabled person and I would be surprised if this were not the situation globally with respect to the UN Convention on the Rights of Persons with Disabilities.  Follow up market research by the Disability Rights Commission (DRC) focusing on this group found that for the majority their identity was not defined by ‘being disabled’ but that most acknowledged their impairment and recognised the unfair treatment they sometimes encountered that was connected to it.   As a result the DRC’s communications employed the global terms ‘people with rights under the Disability Discrimination Act’ or ‘disabled people and people with long term health conditions’ as well as peppering communications with references to particular impairments or health conditions.   Here the important goal was not foisting an identity on people as a condition of entitlement, but ensuring that people with rights knew that they had them and did not let discrimination go unchallenged.

To these ends it is always important to recall that the UNCRPD is not an international Bill of disabled people’s rights, but an affirmation of universal human rights, an acknowledgment that in practice these rights have often been denied to people with impairments and health conditions and a programme of action for State’s to ensure that in future human rights are extended to the whole human family equally.  In short, the UNCRPD is the ‘user guide’ to making human rights a lived reality for people with impairments and long term health conditions.  Those concerned about the situation of people with dementia would be wise to engage with it, and given the degree of focus presently being placed on dementia around the world, those nationally and internationally who have most influence over the way the Convention is being interpreted and implemented would be equally wise to engage with people with dementia and their organisations.

Moreover, the social model of disability was never intended to entirely obscure the intrinsic effects of an impairment or health condition.  Many people with impairments and health conditions rely on ongoing treatments, therapies, rehabilitation and medicine to support their participation on society.  The social model of disability has helped create a new focus on removing barriers, but it has not abated the quest to prevent, reduce or eradicate impairments or health conditions (it is important to note however that some disability rights advocates regard this as problematic in and of itself, suggesting that it reveals a tendency towards eugenics and the devaluing of the lives of disabled people).

Nevertheless the call for a ‘more nuanced’ model is important and connects this paper to wider debates regarding the interplay between ‘sickness’ and disability that have emerged particularly as a result of the manner in which welfare reform has been designed and implemented.   Dementia, like other progressive conditions, depletes functioning and makes the performance of certain tasks difficult if not impossible.  Interventions beyond medicine can help ameliorate these effects, whether inclusive design, new technologies, human support, efforts to tackle stigma and prejudice or innovations in law and through doing so help build a more inclusive society in which dementia is accepted as part of the  human condition.   But we are mistaken if we start with the idea that such interventions are always capable of creating a ‘level playing field’ whereby the effects of impairment play no part in determining what a person can be or do.  Such an approach can expose people to entirely unrealistic, unfair and sometimes outright dangerous expectations, as we see with the design and implementation of Employment and Support Allowance, the flipside of which is to write people off altogether, often arbitrarily, under the auspices of social protection.

The disability rights movement has cultivated an approach to equality and rights which emphasises recognition and accommodation of difference. It is equally important to cultivate an approach to social responsibilities and obligations which also emphasises recognition and accommodation of difference.  A genuinely inclusive society welcomes and nurtures everyone’s participation and contribution, whatever it might be, for the common good.

A more nuanced approach to disability would be able to address the contradictions that have emerged in the pursuit of equality on the one hand and in relation to the targeting of public resources – and social security in particular – on the other.  Without it I fear it will be the pursuit of a rights based approach to disability that will lose out, as human deficits are emphasised by individuals, campaigners and politicians in defence of benefit entitlements.

While this was not the motivation of the authors of this report, their call for a more nuanced approach comes at a critical moment.

Why the Assisted Dying Bill will place disabled people’s lives at risk

As its supporters are keen to stress, the Assisted Dying Bill which will be debated by MP’s on Friday is in theory limited in scope to those who are dying and whose life expectancy is 6 months or less. Whatever the empirical basis for this it is clear that this Bill is not intended to resolve the issue of those who wish to end their life because they have an impairment or health condition that is not terminal in character, such as the situation of Tony Nicklinson (now deceased) or Paul Lamb for example.

Yet this fact does not appear to stop these cases featuring prominently in news stories regarding the purpose of the Assisted Dying Bill. Similarly, while being clear that the Bill is based on the law in Oregon, USA, campaigners frequently cite other European countries having legislated in this area in making the case for the UK to legislate, despite such laws being fundamentally different in scope.  This includes Belgium where for example deaf twins secured assistance to die having learned they were losing their sight and where euthanasia for disabled children is permitted.

This is confusing at best and frankly duplicitous at worse.   It undermines the assurances that campaigners for the Bill have sought to provide – that their ambition is only to provide relief to those who are dying, that this does not concern disabled people and that concerns regarding a slippery slope are unfounded. Moreover, it is clear that some campaigners and lawyers involved in cases regarding assisted suicide regard the Bill as too limited in scope, given its failure to encompass the situation of people like Tony Nicklinson and that they will continue to pursue change via whatever means. Some regard the Assisted Dying Bill as a tactical step – its scope carefully calculated to find the path of least resistance at this point in time.

Supporters of the Assisted Dying Bill claim that its internal procedural safeguards are sufficiently robust to prevent a person’s life being taken involuntarily, or a person acting under duress in ‘choosing’ to seek assistance with accelerating their own death.  Yet they do not appear to wish to engage with the fact that that since 1998 official monitoring of the Oregon law on which the Bill is based reveals that 39% of people seeking Physician Assisted Suicide (PAS) cited concern about being a burden on family, friends of care-givers as a reason and that in 2013 the figure was 49%.  Only 23% cited inadequate pain control.   While the overall numbers seeking PAS may be relatively small, such statistics regarding motivation cannot and must not be ignored and I do not believe supporters of the Bill have provided a satisfactory answer to this so far.

In any case, the issue of safeguarding is far broader than the procedural safeguards in the Bill. Despite progress, the rights of disabled people continue to be routinely violated and neglected in Britain – whether the experience of some of finding a ‘do not resuscitate’ notice at the end of their hospital bed without their consent, the institutionalization, inhuman and degrading treatment of people with learning disabilities or mental health conditions, widespread hostility and abuse, or massive cuts in the practical and financial support that many disabled people require to live and take part in community life.   The fear many have is not necessarily that the Bill presents an immediate threat to their life, but that it and the public debates surrounding it may further diminish the value accorded to investing in disabled people’s lives when ending life becomes a valid, viable option.

On Sunday, the Observer newspaper – a long time supporter of assisted suicide – ran an editorial supporting the Assisted Dying Bill. It claimed that ‘many see a man with locked-in syndrome and see a man who should be helped to die.’ It didn’t entertain the possibility that many see a man with locked-in syndrome and regard it as a fate worse than death.   What the Observer unquestioningly regards as compassion can in fact mask fear and prejudice.   It remains far easier for people to view disability as a tragedy than to accept that disabled people might have good reason to live however profound their impairment.

This is the value system into which a law regarding assisted dying would be introduced and campaigners for this Bill are drawing support from such prejudices. That above anything I think explains why people have entirely legitimate fears regarding its wider impact – fears which our elected representatives must take very seriously indeed when deciding whether or not to lend their support to this profound ethical and legal shift.

If ‘opportunity’, not ‘capability’, was the focus of welfare to work

If a politician were genuinely serious about halving the employment gap between disabled and non-disabled people and reducing the number of disabled people reliant wholly on benefit income to sustain themselves and their families they would focus on opportunity to work, not capability ‘for’ work.

Doing so would lead to two lines of reform.

On the employment gap, the test of public policy and programmes would be the degree to which they widened and deepened opportunity.   Not just more disabled people getting into work, but equally getting on at work and, crucially, staying in work.   Opportunity is multi-faceted.   Government policy should strive to create, nurture or sustain the opportunity infrastructure that widens and deepens opportunity.   Sadly the haphazard reforms of the current government are hacking away at this very infrastructure, drawing no distinction between the enabling supports that create and sustain opportunity and those areas of public expenditure which are emblematic of having failed to do so.   The last government’s anti-regulatory zeal positioned equality law as a barrier to economic recovery, the imposition of employment tribunal fees saw a 45% reduction in disability discrimination cases in one year and the Equality and Human Rights Commission has a budget now significantly less than that of the Disability Rights Commission in 2006-7.

An opportunity-focused agenda would:

  • Address the gaping hole in government policy and programme to close the qualifications gap between disabled and non-disabled people
  • Lead the reform and integration of enabling public service supports around the individual, both through personal budgets and local organizational support, as the Office for Disability Issues had begun to do before 2010
  • Invest much more in enabling supports such as the Access to Work scheme & begin reversing the under and disinvestment in social care.
  • Support and celebrate good employers for doing the right thing, encourage fence-sitting employers to do more and use meaningful sanctions on those that refuse to change, including through removing or significantly reducing Employment Tribunal Fees

A substantial amount of the costs involved could be paid for by cancelling the failed Work Programme as it relates to disabled people.

Regarding social security benefits, opportunity to work, not capability to work, would provide the new metrics for a personalized assessment regime that genuinely avoided the binary distinction of fit or not fit to work.   A work opportunity assessment would be rooted in the understanding of disability included in the UN Convention on the Rights of Persons with Disabilities:

‘disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others’

Hence in determining individual eligibility for benefits, the Work Opportunity Assessment would centre on this ‘interaction’ and in doing so take account not only of the functional effects of a persons impairment or health condition, but the disabling barriers that person faces or would face also. This would mean for example, consideration of the realistic chance of workplace adjustments, the availability of human or technological support, whether a person can access the means to travel to and from work and so on, as well as impact on health and well-being. The outcome would not concern ‘fitness to work’ but ‘prospects of work.’

The Work Opportunity Assessment would simultaneously avoid writing anyone off, while at the same time avoiding subjecting people to unreasonable expectations by taking account of the full spectrum of issues shaping their realistic prospects of work.   Through doing so, it would also inform strategies to close the disability employment gap by identifying barriers and acting as a further spur to find ways to remove them.