We need to talk about the elephant (trap) in the room

Last Friday evening I attended Tom Shakespeare’s lecture on disability equality at the British Library (don’t tell me I don’t know how to let go at the weekend….).

As Tom acknowledged at the start – and presumably because his lecture contributed to a wider series on the theme of equality – a great deal of his speech was ‘back to basics’ as far a disability equality goes.  As such it was somewhat refreshing to be listening to a lecture talking about themes such as accessibility and transport – things we no longer seem to talk about much.

Shakespeare is known for challenging social model orthodoxy and for reasserting the need to recognise the impact of impairments or health conditions and I had looked forward to this contribution.  But here he built what can only be described as an entirely fictional straw man – that the social model of disability has led us to a situation where by focusing on socially constructed barriers our approach to equality overlooks individual need.

One look at the specifics of Britain’s disability equality law shows entirely the opposite to be true – it eschews the ‘equal treatment’ approach employed in relation to all other ‘grounds’ effectively turning the concept on its head and demanding people are treated differently to achieve equality of results.  Employers, educational institutions and service providers are required to make reasonable adjustments.  Under the Public Sector Equality Duty, public bodies are permitted to treat disabled people ‘more favourably,’  The Independent Living Movement has focused on both barrier removal and on commanding and taking control over resources to secure the support that some individuals require to living independently and to be included in the community.  And the UN Convention on the Rights of Persons with Disabilities also recognises this by focusing on ‘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.’

Of course we have neither fully achieved equality nor independent living (though we have, as Tom sensibly acknowledged, come a long way). But in my view the challenge rests not with how we have conceived of disability equality.  Rather it the failure of that idea to penetrate deep enough into the the design of public policy and practice and in particular in re-engineering financial and practical support from the benefits system and public services.

And this is where in my view Tom came completely unstuck.  Quoting Pats Petition and Carers Watch he talked of the ‘the elephant in the room’ – the suggestion that progress rests upon acknowledging that some disabled people cannot compete on an equal basis with others in the labour market because of the effects of their impairment or health condition.  Tom argued that Pat’s Petition and Carers Watch had ‘done us a favour’ in asserting this fact, which he implied was a further symptom of social model advocates allowing public policy to ignore individual need.

Putting aside the fact that at every stage in the development of disability rights people have pointed to various elephants in the room (that some disabled children can’t be included in the education system; that some adults with a learning disability can’t living the community; that older disabled people can’t make choices about their own support using direct payments) what I believe Tom – and Pats Petition/Carers Watch – have in fact fallen headlong into is the elephant trap in the room: undermining the promotion of disability equality in employment in order to oppose welfare reform.  

For the sake of any doubt, let me be absolutely clear that I believe many people are being subjected to benefit conditionality and sanctions who should not be, undermining their right to social protection.  I believe this because, as Tom pointed out, the labour market disadvantage faced by disabled people is so profound that to demand of disabled people what the State demands of non-disabled people, without distinction, is morally unjust.  This is especially so given we know that programmes the government has put in place to support disabled people to find jobs are hopeless failures and that discrimination remains commonplace. Fundamentally I disagree with conditionality itself, which I fear is now nothing more that a political device and one which diverts attention way from the real questions of tackling poverty and creating the social and economic conditions and supports to help people secure good jobs.

But the huge tactical error of Pats Petition/Carers Watch and Tom is to collude in reducing this issue to a question solely of the impact of a persons impairment or health condition.  This is in the interests neither of challenging welfare reform or of helping to open up employment to more disabled people.  On the former it gives tacit support to the idea of judging employment potential on the basis of physical and mental functioning alone, with no account given to barriers, job opportunities, skills and the like, thus failing to challenge the assumptions underpinning the WCA which lead to people being subject to unreasonable conditions and sanctions and having their income reduced. On the latter it contributes to the roots of much prejudice faced by disabled people – low expectations – strengthening negative stereotypes through endorsing the essentialist idea that impairments or health conditions predict individual potential.

Tom also urged us to recognise the way the effects of impairments and health conditions can fluctuate and change over the life course, and in particular the need to recognise the effects of ageing.  This is critically important. Yet though he acknowledged that progress has been made on disability rights he didn’t seem to acknowledge how over time the way people with impairments or health conditions interact with the world around them can also develop, either through their own strategies for living or more importantly in this context because of political, economic, social, technological, legal or environmental change.  For example, the employment barriers faced in an economy founded upon manufacturing, demanding physical labour and the operation of machinery are likely to be vastly different from those in an economy dominated by service industries, where greater value is placed on ‘social skills.’

The implication of not recognising this is to suggest that some impairments or health conditions will always make paid employment unrealistic irrespective of the type of work available and hence expecting people with such conditions ever to work is unjust.  Yet it is only very recently that the criteria for out of work disability benefits changed so that people registered as blind were not automatically considered unfit for work.  The functional impact of being blind or partially sighted has not changed.  What has changed is the potential for adjustments and support, especially through developments in information and communications and technology, offering the prospect that labour market disadvantage can be more effectively tackled.

The concept of labour market disadvantage offers a way to reconcile the objectives of promoting employment opportunities and social protection. A more rounded assessment to replace the WCA as proposed by the Labour Party Poverty and Disability Taskforce would take account of relative disadvantage – not just functional ‘limitation’ – in determining benefit entitlement, while at the same time helping to pinpoint the barriers that need to be addressed by an effective employment and disability strategy.

Given Tom’s knowledge of history and the fact that he drew our attention to the death of Connor Sparrowhawk (who drowned having had an epileptic seizure while taking a bath, unattended, in an ‘Assessment and Treatment Unit’ last July), I was surprised that he didn’t query whether the present organisation of Britain’s ‘welfare state’ (which campaigners such as Pats Petition and the Reclaiming Our Futures coalition seem want to defend) actually respected and promoted disability rights.  Tom argued that Connor died because his ‘needs’ were overlooked.  Yet hundreds of millions of pounds of public money are spent on such units precisely to address some conception of individual ‘need.’   In my view what was overlooked were Connor’s human rights – his right to be regarded as equal in dignity and worth, his right to life, his right to be supported in the community, his right to flourish.

To be fair to Tom, he did conclude by pointing to human rights – and to the UN Disability Convention – as a way forward, and expressed disappointment at how little a role human rights play in UK discourse.   But he went on, in response to a question about personalisation, to link personal budgets to a ‘neo-liberal’ agenda, echoing recent interventions by academics such as Peter Beresford, Nick Watson and Colin Barnes all of who appear to have struggled to reconcile human rights with their political beliefs.

It is this failure that in my view is the ‘elephant in the room’ – the fact that our welfare system and public services actually need radical reform to bring them into line with our modern approach to disabled people’s rights, yet the forces ranging against such reform include not only the present government’s austerity measures, the limited imagination of our political parties, public attitudes and ‘producer’ interests, but some prominent disability academics and activists as well.

Disability rights has got stuck.  Sadly I’m afraid this lecture did little to move us on.


















33 thoughts on “We need to talk about the elephant (trap) in the room

  1. This is a very selective and rather wilful reading of my talk. I was talking about how disability studies theory and disability rights rhetoric needs to acknowledge impairment, not about whether or not particular policies have managed to take account of impairment. You have my argument the wrong way round! Again, dominant international Interpretations of CRPD focus on barriers and take a very social model perspective, which fails to take account of conceptual progress beyond the strong social model. Of course, employment experience is always about the interaction of impairment with the provision which is made. But the point which Pat’s Petition and Carers Watch – and myself – were making is that it is impossible to equalise for all disabled people, in any imaginable reasonable adaptation. I am not talking about people who are blind – who have always been among the most successful of disabled worker groups – but about people with complex conditions, intellectual disability etc. You cannot blame it all on labour market disadvantage! You are also wrong about LB case: Connor’s needs were not acknowledged, which is why he drowned, because he was not supervised/supported. That also reflects a neglect of his human rights, undoubtedly. But rhetoric about human rights has to be connected to understanding of specific human needs. On personalisation, I cited evidence – of the bureaucratic costs, of the gap between RAS and actually costs, and on the unforeseen consequences such as the closure of collective provision. I don’t think I am the one who is biased by ideology!

  2. Hi Tom

    Thanks for your response. You say ‘I was talking about how disability studies theory and disability rights rhetoric needs to acknowledge impairment, not about whether or not particular policies have managed to take account of impairment.’ But unless I misunderstood you did appear to be suggesting that the neglect of disability studies to do so had allowed individual needs to be overlooked in the real world – I thought that was the purpose of citing Pat’s Petition and what happened to Connor?

    I agree entirely with the point you make about Connor’s needs not having been met and hence his rights having been violated. My point is that very way his needs were conceived of was not rights-respecting in the first place, despite many millions of pounds being spent on such models. And that speaks to the wider point I am making – that we have been trying to construct a disability rights agenda out of the post-War welfare state without carrying out the reforms necessary to achieve the ambitions in e.g. Article 19 of the UNCRPD. This means that for the most part we have an ‘all or nothing’ approach whereby access to benefits or services is contingent on being able to demonstrate a lack of productive potential or agency. That further deepens disadvantage by depriving people of the support that might allow them to work or to contribute in other ways.

    As a response to austerity and the unhinged welfare reforms of the past few years – campaigns like Pats Petition are defending the status quo, using arguments that reenforce some of the problems they and others seek to challenge (e.g. the absolute focus of the WCA on functional capacity or emphasising lack of productive potential). I think these are counterproductive and unnecessary – a focus on labour market disadvantage would not ignore the impact of impairments and health conditions but it would look at the issue of potential/likely interaction with the labour market in the round, the barriers a person might face, the support they might need and whether these can realistically be addressed or put in place. This would actually be more likely to help avoid people being unreasonable pushed towards the labour market and their incomes being placed at risk, but at the same time would not demand decreeing that people with x impairment or health condition are de facto incapable of working.

    I should also say that I don’t think these campaigners are confining themselves to the most ‘complex conditions’ – their primary focus is people falling into the ‘Work Related Activity Group’ (of course we can dispute whether some people should – according to the WCA as is – be in that group). Most people with the most complex conditions are in the Support group and not subject to any conditionality already. I think they are focusing on people who are among the most disadvantaged.

    Although I have no personal problem with ideology, I’m more interested in practical, real world solutions and its from that perspective that I make this analysis: I think we are using the still significant public resources available really badly and I think we can use them in way which much better supports all disabled people, whatever their impairment of health condition.

    As for the RAS etc, of course there is too great a gap between what people require and what is being made available, but I don’t think self-directed support itself is a Trojan horse for cuts/retrenchment; local authorities have little choice but to make cuts and this is the system in place to which/via which cuts are being made. As I said here, we need to remain vigilante in ensuring personalisation remains the servant of independent living: http://theindependentlivingdebate.wordpress.com/2014/02/18/personalisation-must-always-be-the-servant-of-independent-living/

    Best wishes, Neil

  3. I don’t think we quite have an all-or-nothing approach: DLA/PIP is, or should be, about meeting the extra costs of disability for people who are in or out of work.
    I suspect we agree on quite a lot. As I said on the night, I do think disabled people have an obligation to work. I feel frustrated when people opt for a life on benefits, when other people with exactly the same conditions were productively employed. I was drawing attention to the fact that for a range of reasons, disabled people generally work part time, retire early and some cannot work at all. I cited evidence of this. We need a benefit system which is designed to push people into work, but in a humane way: we do not have this.
    You cite reasonable accommodation/adaptation as an example of policy meeting individual needs. I would not theorise it in that way. It seems to me that RA is barrier removal at the individual level – recognising that environments and systems are disabling, and trying to remove those barriers to the fullest extent compatible with the efficient working of the organisation/workplace. Of course, I entirely support this, and it is fundamental to the CRPD etc. I was criticising the conception that barrier removal – of which RA is an example – was able to equalise or enable in all circumstances. What would RA look like for someone with profound intellectual disabilities? What would RA look like for someone whose condition meant they could only do one hour’s work a day? What would RA look like for someone with severe depression or florid schizophrenia who regularly has to take a few weeks off work until their condition improves? I remember a famous disability researcher/advocate saying years ago that DRC was the only employer who would put up with his fluctuating mental health.
    Let me be clear. I think people are disabled by society. And I think they are also disabled by their bodies. I provided evidence on the night that this position was accepted by the majority of both disabled and non-disabled people. As a society, we have a moral and human rights obligation to remove barriers wherever possible, to design flexible systems, to accommodate difference. In return, disabled people have a responsibility to work wherever they possibly can. However, not all disabled people will be able to work enough hours to earn a living wage. Some disabled people will not be able to work at all, due to having an impairment which RA and barrier removal cannot compensate for. We need more research to understand how large a group this is. We need a benefit system which is tapered, which supports people in work as well as those unable to work, and which incentivises work (carrots and sticks) but not in ways which penalise those who are out of work through no fault of their own. I quoted Marx “from each according to ability, to each according to need”.

    • Thanks Tom – yes it does seem there is a great deal on which we agree. All disabled people have a right to an adequate standard of living and to social protection and whatever system we design has to respect, protect and ensure this. The current approach clearly fails this test by using the threat of financial insecurity to push people towards a labour market which is not receptive to them, without employment support that works and without the guarantee of a sustainable income. I agree – as we said in the Labour Party commissioned poverty and disability taskforce – that we need a flexible social security system which celebrates and supports all forms of agency and contribution rather than penalising them (the all or nothing approach I referred to).

      I think there is a fundamental difference between a system which simply sustains people and one which nurtures agency and potential and which supports participation. Much of our current welfare state with the partial exception of things like DLA/PIP, Access to Work or Disabled Students Allowance, is limited to sustenance, and it actively penalises agency and potential. I don’t think we should be defending and promoting this by arguing that disabled people can’t ‘be and do’ things as a consequence of their impairment or health condition. Doing so sets us back even further from achieving the reforms we need and risks taking us back towards the paternalism (at best) or institutionalisation of the past. My argument is that we should instead be saying that we have yet to find the ways to make adjustments or provide the individual support some people require, or that the organisation of society, including work, presently precludes people. Doing so both justifies ensuring that – in the face of barriers and lack of opportunities – people have sufficient income and support to lead a good life (to each according to his need/rights) while focusing energy on the search for new ways to make adjustments and provide the support that will enable more people to participate and contribute (from each according to ability).

      My point about blind people was that until very recently the benefits system determined that they were ‘unfit to work’ – was this as a consequence of the impact of their impairment, or the extent of the barriers and disadvantage they faced in the labour market? Is it not conceivable that people with conditions which today determine that they are considered ‘incapable’ of working will not be in future as we transform work, find new ways to make adjustments or to offer support?

      For the sake of clarity I am not talking here about ‘equalising opportunities’ measured against some assumed norms – I am talking about the right of each and every individual to reach his or her individual potential unencumbered by prejudice and discrimination and with the adjustments and support that they require. I think a model of inclusion is far more helpful than an ‘all things being equal’ approach.

      Best wishes, Neil

  4. Let’s not fall out about this. There are two approaches here which have often appeared to be in conflict. There is the movement to include disabled people in society on the same terms as other people, and there is the fact of impairment which makes disabled people different and means that they may need some protection and support. We feel that the two approaches are both essential and work well together, but worry that, for too long, disability leaders have emphasised the positive route of inclusion at the expense of the necessity for protection.

    Neil says unfairly – “But the huge tactical error of Pats Petition/Carers Watch and Tom is to collude in reducing this issue to a question solely of the impact of a persons impairment or health condition.”

    We do not do this. We acknowledge both approaches. We support the brilliant progress made under the social model for inclusion – we are not dismissing or ignoring it. But we worry that the need for support gets lost, as shown by Neil’s reaction. We ask him, and others, to accept that there is still a need for protection. Let’s face up to this conflict. Let’s not demonise one another. Let’s work together to find a balanced approach. We are not that far apart.

    We have no objection to the continued push for inclusion. But we want the safety net back. We want balance back. The loss of the right to protection is not a price worth paying for inclusion. Let disabled people themselves make their own choices as to whether they want inclusion or protection at any given point in time. Society needs to offer both.

    Neil says “For the sake of any doubt, let me be absolutely clear that I believe many people are being subjected to benefit conditionality and sanctions who should not be, undermining their right to social protection”

    And that is all we ask. Bring back protection so people feel safe and then continue with the crusade for inclusion. Sorted.

    Pat’s Petition

  5. A practical example: until recently I ran a traineeship scheme for disabled people wanting to enter the housing industry as professionals. One of my outstanding trainees – let’s call him Richie – was both Blind and had a significant hearing impairment. As Neil rightly says, even ten years ago he would have in all likelihood been consigned to a life on welfare benefits and been deemed unemployable. But at interview his potential shined through and his agency was definitely nurtured as a trainee – via Access to Work provisions (a brilliant support worker and customised database-reading accessibility software), DSA and other state-funded interventions. He finished the traineeship with honours, and a housing qualification. And crucially he also had a hugely positive impact on his colleagues, the tenants he worked with – some of whom were disabled – and left a great legacy for the organisation, when he drafted new internal policies around inclusive service delivery. Sadly, I’ve lost track of Richie. But I fervently hope that another organisation is not only giving him the opportunity to maximise his potential , but to tap into his reservoir of talent and value it in a reciprocal way.

  6. I am a novice in this debate, and struggling to understand more clearly its terms – but why does it have to be framed as an opposition between “inclusion” and “protection”? Or even as a right way and a wrong way? I don’t really understand why it is a discussion about “the disabled” or “carers” as if they were an homogenous group where one version or another provides the answer.

    When my daughter first received disability benefits as a child, the amounts were very small – but they did, to me, represent a form of inclusion – an acknowledgement from the state that we were not left to struggle on our own. Over the years, the were a form of protection too – which enabled me to continue to do the best I could to make her life as normal and rewarding as possible. Yes, it shifts at 18. My daughter, for one reason or another, is among those where work is not all that realistic an option. If that were not the case, if she were among those who wanted very much to be included in the more conventional desire to be like everyone else, no doubt I would feel differently. Yes, the world of work has changed, and yes, it ought to be possible to make innovative attempts at inclusion to make work fit the individual rather than the other way round . But is that what is happening? Or are many people just being subjected to a horrible discourse of exclusion? Being reminded constantly how expensive they are to the state, and made to feel worse? If there are people working successfully towards the ideal forms of inclusion, good. I suspect there are quite a few who now no longer feel included or protected.

    • Thanks for this Liz.

      It seems simple to frame the debate in terms of those who ‘can do’ and want to be included in the work force on equal terms, and those who ‘can’t do’ and want protection. That is effectively what ESA does with the WRAG and the Support Group.

      But this model doesn’t work because sick and disabled people don’t divide neatly into these two groups, as WCA has demonstrated. The conflict between ‘can do’ and ‘can’t do’ goes on within each sick and disabled person. Some are nearer to one end of the spectrum and some are nearer to the other. Most are balancing the two factors and probably swing around between good days and bad days. Which means that most need support for inclusion AND most need some protection.

      It is debateable whether conditionality motivates or demotivates. The government use it to motivate but for many people it produces fear which makes them withdraw. We agree with Neil that conditionality can be counterproductive and needs to be modified. We want all the threats – conditionality, time limits, means testing – modified or removed.

      Let’s make ESA a positive experience not a threat.

      Karen, Pat’s Petition

  7. Thanks for a great debate on an important topic.

    What strikes me most of course if the strange sight of brilliant disability campaigners disagreeing about what seems (to my eyes) quite narrow points, at the same time as society is slipping into an increasingly negative view of disability, with cuts targeted on disabled people and Government resorting vicious rhetoric. In that respect campaigners like Pat’s Petition have done a brilliant job – with no resources – at drawing attention to a grave injustice.

    Nor, in my experience, have Pat’s Petition or Carers Watch ever been remotely naive. Quite the opposite. I cannot say I have ever seen anything wrong with their analysis of the problems in the WCA. Moreover the deeper problem, which is inherent to the WCA, is the determination to link income security to disability. [This is a much bigger debate, but in my view disability campaigners should start focusing on Citizen Incomes, rather than trying to continue to link income to ‘willingness or ability to work’. Advocates of a Citizen’s Income argue, for example, that it is a way of fulfilling our unconditional right to exist.]

    Where I do agree with Neil very much is that we must stay alive to the possibility that our current conception of how to meet needs or to fulfil rights might change as we learn more. I have spent my career, working with many others, demonstrating that people with severe disabilities can work, own a house, have friends and be great citizens. Always this was in the face of criticism and disbelief. Always we were successful. A decent welfare system should be capable of positive and progressive reform – not the wicked nonsense that we are currently being subjected to.

    [On a final point – as the person who invented both Personal Budgets and the RAS – life teaches you that ideas and tools take on a life of their own. Ideas are interpreted by the people in the light of their own values, tools are used by those into whose hands they fall. They may be not ‘values neutral’ – but they are certainly not immune from other people’s values. So, as I don’t really know Tom or Neil personally, and there may be some confusion – I’ll just clarify – I’m not a neoliberal!]

  8. It’s good to read this debate: fantastic thinkers and activists on disability debating crucial issues for our disability rights strategy. We should not get polarised or divided – but we need to have strong debates, because the issues are so important. I heard Tom’s talk last Friday. It was eloquent and I agree that we need to think beyond only barrier removal. But to my mind a couple of things were missing: a vision of social protection that goes way beyond the welfare state as we have known it, by changing power relationships; and an ambition to transform the world of work so that more people can participate. You can’t cover everything in one talk, but perhaps in an ongoing debate we can.

    On social protection – when cuts put our backs against the wall, people rightly fight to protect our earlier gains; but we don’t in truth just want to keep what we have had, to get boxed in as ‘vulnerable’, in need of help and safeguarding. We want completely different uses of public money – for instance, a massive expansion of peer support and an overthrow of risk averse health and social care policies that restrict independent living. Safeguarding all too often acts against choice and control, the use of co-ercive powers under mental health law is growing inexorably, and as Shami Chakrabarti put it last night ‘there are many prisoners who are not convicted’ in care homes, psychiatric institutions and the like. So we don’t want to sustain these disempowering health and social services. Tom, you argued that the disability community’s proposals for personalised services had allowed government to dismantle provision. The same arguments were made years ago in relation to community care and de-institutionalisation. People said the government had seized the rhetoric of radicals and used it to justify cost-cutting. In that case, de-institutionalisation, even accompanied by some cost-cutting, was on balance a positive – all the research shows people had better lives after leaving institutions, and even if they encountered difficulties they didn’t want to go back. The current position is complicated – but we need both to fight to protect resources and to campaign for forms of support and ‘social protection’ that offer freedom and the opportunity to participate in families, communities, employment and more. If we take a relational approach, as you argue in your book, it needs to be one that accords power to the person making use of support.

    On employment, if the DRC (as you mention above) can accommodate someone living with a fluctuating mental health challenge, then so can other employers – and by the way, I was there, and we accommodated people so they could do fantastic work, not out of some ideological whim. It worked there and could work elsewhere – particularly if government made some simple changes to Access to Work and statutory sick pay to remove disincentives for employers taking someone on with a fluctuating condition (as recommended in several reviews to Government including the Perkins review). To be clear, this is not to argue that everyone can work, still less that the ridiculous processes of the :Work Capability Assessment and sanctions regime are justified – they are counter-productive, cause fear that is the exact opposite of what people need when they try something new, are based on no evidence, are not fit for purpose, are unfair (I could go on). But we should not lose our vision that the world of work could change so that more disabled people could take part. For instance, for some jobs annualised hours can work; or groups of people living with fluctuating conditions can work together on contracts and cover for each other. It would not be beyond the bounds of possibility to incentivise and support this kind of development. If we stop at the argument that ‘some people can’t work because of their impairment’, we risk essentialising the problem and de-contextualising it. Let’s not forget that it used to be obvious in society that there were many jobs women could not do. We hope that in future we will be surprised that we used to think people with fluctuating conditions couldn’t work – because by then we will have improved the way we organise work, so people can work when they are able to.

    We need short-term plans to stop cuts alongside plans to make freedom and participation real.

    • Thank you for this – Liz

      At Pat’s Petition and CarerWatch we understand the dedicated approach that DRUK take on trying to change the terms of debate about disability and society. While we understand a lot of the arguments you make we have some reservations about the way you tackle this.

      In particular we have the same difficulty as Tom Shakespeare about how you plan to deal with impairment that impairs. Using the Social Model we identify the main barrier produced by society to employment as the competitive labour market where an employer is required to recruit on the basis of which applicant will produce the most work for the least money. We think that this fits very badly with impairment. The only solution we can see is intervention in the labour market. We know that you don’t agree with us on this and we could discuss this further but for the moment it is a distraction. These are long term goals and we have an immediate emergency to deal with.

      For the moment we want to focus on the transition of two million sick and disabled people from IB where they felt relatively safe to the nightmare of ESA with the threat of the WRAG.

      This is an emergency and we need all disability campaigners – what ever they feel about the long term goals – to focus on some short term steps that make ESA safe.

      You say
      To be clear, this is not to argue that everyone can work, still less that the ridiculous processes of the :Work Capability Assessment and sanctions regime are justified – they are counter-productive, cause fear that is the exact opposite of what people need when they try something new, are based on no evidence, are not fit for purpose, are unfair (I could go on).

      We completely agree with you about this. We can all see that the current back to work program is a disaster and that disabled people are not getting jobs. We may disagree about the details of the long term solutions to this but in the short term can we agree on some reforms to ESA that will take away the immediate fear. This is a crisis in real time happening now.

      Can we come up with some short term proposals to deal with this emergency that we can all get behind and campaign on together.

  9. “If we stop at the argument that ‘some people can’t work because of impairment…”

    I think that those who continue to put the case for support for those who are unable to work do so because the pendulum has swung so far the other way in the last few years. “Disabled people” includes “sick people” and many cannot work because of their illness as well as social barriers. The fear is that they will be forgotten. I notice in many discussions of this kind those who can’t work get a token mention – a sentence or two – then the main thrust is back to ‘Work’. As someone who is unable to work due to multiple illnesses, I find this very worrying.

    I wonder what percentage of “disabled people” have illnesses rather than functional limitations? I suspect it is a very large proportion. With illness comes fatigue, nausea, pain, inability to sleep, concentrate, communicate, side effects of medication etc etc. None of these is very conducive to holding down a job, even with the most understanding employer in the world!

    Yet the WCA has proved that many people suffering these symptoms have been told to work and sanctioned if they cannot. (I use the word ‘suffering’ consciously).

    I feel it is important to keep reminding people lest we forget along the way.

    I also do not believe that work is the be all and end all of what is important in life!

  10. Wow I didn’t expect this level of engagement but I’m really pleased it’s generated so much debate.

    Ok so first of all I don’t think Simon is a neoliberal nor do I think self directed support is a neoliberal wolf in sheeps clothing. In fact I find the increasing tactic of those on the left of labelling things they disagree with as neoliberal somewhat empty.

    I remain bemused at the claim by some that personal budgets facilitate state retrenchment on the one hand, yet on the other fail to offer disabled people the control provided by handing over the cash to people to spend as they see fit. If there is a fault with personal budgets it’s that the State is clinging on to its role, not walking away from it. Of course there is a decline in spending on public services which is further exposing the gap between what is available and what people require, but self directed support hasn’t create that gap – one might even argue that it has helped to expose it. I also still fail to see how direct payments can be meaningful outside of some marketplace of things on which to spend them.

    Moreover I think insofar as a there has been a ‘neoliberal’ agenda, it has facilitated a transfer of power to disabled people that the left is still inclined to resist as a consequence of its inclination to protect the interests of public sector workers over the people requiring services. I agree that highly individualistic societies lack the relational dimensions that are so critical to building social inclusion. But highly sociocentric systems – with fascism at one extreme and communism at the other – have hardly been positive for disabled people either. And while we face many challenges, which one might lay at neoliberalisms door, we shouldn’t forget that it is under so called neoliberalism that a great many gains for disabled people’s rights have been made over the past 3 decades, and that it seems likely that this economic organisation will continue for the foreseeable future.

    The challenge for disability rights now is to re-establish the levels of support some disabled people require to assume citizenship. And this is where I disagree with Simon that these are ‘narrow points.’ I don’t think you would ever describe the difference between self-directed support and traditional commissioned care as a ‘narrow point’ yet in my view this debate has equivalence – do we only want a welfare safety net ‘for those who can’t’ based on arbitrary decisions regarding dubious measures of functional impairment about who is ‘incapable’ (with capability of paid employment the sole determinant) or do we want a welfare state geared towards supporting all disabled people to realise their potential and goals? This is why I think the distinction drawn by Karen between protection and inclusion is a false one – you can’t be both excluded and protected (which is why we should always challenged the description of institutions or special schools as ‘protective environments’). Yet the approach of our welfare state and the rhetoric surrounding it is to force this distinction – to be a deserving disabled person is to be an object in need of protection; to have agency and potential but still to seek support is regarded as borderline fraudulent. This is hopeless for the development of disability rights which – as Tom noted in his lecture – requires not just barrier removal but that supports are brigaded to support people to take up the opportunities a more barrier free world offers. Yet I am afraid in the interests of protecting people against the current barrage of welfare reform Pats Petition and others are in effect defending this conception of deserving and undeserving groups, centred on functional capacity.

    Having said all of this I do recognise how difficult a transition from this model would be. The Labour sponsored poverty & disability taskforce I sat on began with an idea that there should be no disability related out of work benefit at all and that any savings should be used to fund a disability costs allowance to replace DLA/PIP. But our ‘do no harm’ principle prevented us from proposing it as we could not find a way to ensure that those presently receiving enhanced out of work benefits for reasons related to their impairment or health condition would, via a benefit concerned with extra costs of disability (to which many are already entitled via DLA/PIP) would not ultimately lose out. The principle is right. The practical reality (other than via a citizens income) is much more complex.

    • At Pat’s Petition, we don’t distinguish between those who ‘can’ and those who ‘can’t’: we think everyone both ‘can’ and ‘can’t’ in different mixes at different times. We think disabled people must be both included and protected. Until we can all be included, we need to make sure those who need it are protected. We cannot give up one in favour of the other.

      With so many different conditions, illnesses and disabilities, it isn’t surprising that campaigners and leaders have never been able to agree on a one size fits all model. There will always be debate about whether we should concentrate on the vision of long term aims and whether short term firefighting is a distraction. But at the moment we have an emergency.

      Two million people were moved from the relative safety of Incapacity Benefit to the nightmare that is ESA/WRAG/WCA. Currently ESA tries to divide disabled people into two meaningless ‘can’ and ‘can’t’ groups and treat them differently. This has the effect that people aim to be in the safety net of the ‘can’t’ group: hardly an inclusive aspiration.

      As disability campaigners, we need to agree together on some immediate changes to ESA that will make it safe and healthy. This is a crisis and there is a General Election coming in twelve months time and manifestos are getting written now.

      If we could all agree then united we might prevail.

      We would imagine that the emergency changes would focus around:

      * the division in to ‘can do’ and ‘can’t do’ groups
      * the sanctions and proscription in the WRAG
      * time limits
      * means test at such an absurdly low level

      Can we agree a programme of immediate change?

      Karen, Pat’s Petition

  11. Tom’s lecture was on “…Enabling Equality – From disabling barriers to equal participation”. I mention that in passing.

    Tom suggested that in order to further the aim of equal participation disabled people have a duty to work. What he didn’t go onto say was that in order for that to work, in my opinion, employers/ society must also have a duty to employ disabled people. That doesn’t mean workfare. That doesn’t mean picking up litter. That goes beyond the duty not to discriminate. It goes beyond the ability of an employer to favour a disabled applicant over an equally well qualified non-disabled applicant. If we are serious about equal participation and equality of opportunity then we must develop a “New Deal” for disabled people based on their needs, abilities and ambitions, in relation to the issues of inclusion in the Labour market and inclusion in society in general. This is important because I understood Tom to mean work in the widest sense, not just paid employment.

    Tom quoted Karl Marx, “From each according to his ability, to each according to his need” without in my mind addressing another of the “elephants in the room”. In 20+ years experience of being a disabled employee, following a severe head injury that left me with a degree of “Executive dysfunction”, I have found my ability comes a long way second to the employer, behind prejudice against my difference. We have debated reasonable adjustments but I don’t think we take seriously the need to change the attitudes of employers. Current policy seems to be that as people are undoubtedly ethical we will convince them to change, as adopted by the Government’s latest Chocolate Teapot, “Disability Confident”. I wonder how long we will continue with the carrot before resorting to the stick, as this approach isn’t working as the statistics of disabled people in employment demonstrate?

    I think that rather than needing a new model of disability including both impairment and social model issues, we need a new inclusive model of society which allows for equal participation and equality of opportunity.

    We need to move away from defining ourselves and expecting society to adapt. We need to move away from defining our struggle as being one for access, or for employment or for benefits etc. Perhaps the time has come to model a new society that delivers equal participation and equality of opportunity. Then we could challenge the rest of society to consider it?

    I believe we are a long way past being able to rely on a moral solution to our problems. I believe that a legal or human rights solution will not be effective as this government (and probably any future governments) will just change the law to suit their ideology. We need a political solution that leverages the moral, human rights and legal issues.

    Are we up to that challenge?

  12. When we did research with people with restricted growth, I remember we met two women in the same town, similar backgrounds etc. One said that her condition had ruined her life: she was out of the labour market and claiming Incapacity Benefit, single, few friends, lonely, miserable. Another had a job, partner, friends, said she never thought of herself as different. Same condition, gender, place, class, age. The challenge is to design a work and welfare system which can respond to the diversity not just of different conditions, but of different lives. It’s a very complex and difficult question. We want to incentivise disabled people who can work to participate and to take responsibility. At the same time, where people are limited by illness or impairment, we need to accept that and support them. The point about blind people was not that they were not allowed to work – blind people have always worked. It’s just that in the past, to be blind was a passport to welfare benefits, if you wanted them.

    And of course, we want to remove barriers in the workplace and make work flexible etc. That goes without saying Liz, even though it was not something I could cover in one lecture! I do think there was a difference between DRC and other employers in the private sector, which makes it misleading to say that if DRC could do it, anyone can. DRC did not have to make a profit. Social goals were its bottom line. In the private sector, it can be expensive and difficult for companies to carry people who are not equally productive, or to support complex arrangements such as the ones you mention. And some, by no means all, disabled people have those complex needs – approximately 1/3 of people in work and 2/3 of people out of work are limited in the work they can do, according to stats. I think it’s interesting that the employment gap is so stubborn. There is very little evidence that anti-discrimination legislation has made a big difference in either USA or UK. So clearly, a wider approach is needed, and imaginative thinking, maybe of the sort Liz proposes.

    I was certainly not saying that any particular individual was a neo-liberal, it would be presumptuous of me to make judgments of people I barely know! However, that does not mean that a particular social policy innovation cannot be described as compatible with neo-liberal approaches to the world (and in places like Sweden and USA, personal assistance has followed a very consumerist, neo-liberal philosophy). As we know, radical social changes can be a cloak for cuts, and can appeal to austerity governments because they appear cheaper. It was perhaps a mistake for early researchers advocating direct payments for personal assistance to say that this would save money over traditional provision. We know that true empowerment costs money. A government seeking to cut social care spending can always either cut the hours of support a person gets or force agencies/employers to cut the payment that workers get. Because of the thousands of individual packages, that becomes far less visible than previous cuts to direct services would have been (and there are no trades unions to contend with). Of course, no one wants to return to institutions or to traditional day centres. However, the jury is out as to whether personal budgets (as opposed to direct payments/personal assistance) are genuinely empowering. It’s all very well for all of us to chat about these things, but we really need some hard evidence.

  13. This is a fascinating debate that I’ve missed, until now, because I was away then went straight into meetings etc on my return yesterday. The issue about personalisation is perhaps easier to address; in my view, the problems with personal budgets are not confined to the shortage of funding (although that’s an issue, as funding drops and demand rises). In my view, there are two main problems: firstly, the bureaucracy surrounding PBs is arguably both ineffective and expensive, with FACE assessments, RAS, panels etc all designed to identify the “correct” budget but not necessarily working – why can’t the indicative budget be determined through a normal social care assessment? Secondly, no-one has really worked out how the benefits of direct payments can be available to those who cannot manage their own budget and don’t have a family member or friend to manage it for them – this is an area for someone to come up with a solution to what is essentially a practical problem.

    I have sympathy for both “sides” in relation to disability and work. Writing people off is a mistake, but common sense tells us that people who are actually ill, rather than disabled, and people with profound and multiple disabilities are much less likely to be able to work whatever adjustments are put in place. The problem is that the Government has taken hold of the social model and twisted it to justify cruel and abhorrent policies. Almost as effectively as they’ve boxed Labour into a corner so they dare not promise to actually do anything, they’ve boxed us into a corner, implementing policies that are difficult for us to oppose because they use our language and our concepts. One way to counter this is to draw attention to the fact that the reality on the ground is not achieving what the Government claims it intends to achieve, as Neil points out. Our arguments need to be careful and measured, which is difficult to achieve through in-your-face campaigning!

    However, what I was thinking before I realised this debate was happening, is that we need to be careful that we don’t fall into copying the Government and failing to consider what the evidence shows, or even if there is evidence that’s useful. For example, do we have any evidence (numbers, I mean) on the number of claimants in the WRAG who are being expected to undertake tasks that are totally inappropriate given their level of impairment?

  14. Arriving late to the party as usual……

    My current thinking is leading me to two conclusions:

    1. We need to move toward a wider public recognition that impairment and living with long term conditions is part of the lifecycle. This was a message that was recently echoed by the WHO. We are still caught in the midst of ‘disability’ being considered something that is affecting a ‘minority’ by the general public. Furthermore there is disparity in the populations of those whom consider themselves disabled and those living with long term conditions 11.2 million disabled people and 6 million people living with long term conditions according to the Peoples Survey). I fail to see how those living with long term conditions are disabled at least in some way.

    We need to move toward a society that recognises impairment as part of the lifecycle and therefore changes perception of impairment from sickness to reduced functioning. However research in the field of Cerebral Palsy has found there is disparity between actual functional capacity and perceived capacity. How this translates across conditions I am unsure, but the point I think is that impaired role models have role to play going forward, specifically increased visibility of role models enjoying different life choices. There also needs to be distribution of the information that informs and supports these life choices.

    In regards to how Welfare comes it this, we need system which rewards ambition (relative to the individual) and is not tick box exercise. One which is facilitated by not only a professional team but impaired peers as well. I should also say that the definition of ambition, should not be limited to work related related activity but rather activity. Those who a incapable should still have the personal expectation that they can have a lifestyle, which goes beyond mere survival. This becomes vital, as we are beginning to understand the health implications which are associated with chronic inactivity. There has been acceptance of reducing functionality as part of a condition course in the past, which is completely unacceptable. For me, the independent living movement now needs to focus on the business of living.

    Let me be clear, I am fully behind the barrier removal proposed by the Social Model but as Tom has rightly suggested impairment must play a part in the thinking. Reward peoples’ ambitions, allow them to dream in a realistic way.

    2. Education in Schools – Children need to be educated about the realities of impairment and disability. After all, it will affect more of them for longer and that trend will only continue. I feel how the next generation, view and treat people with long term conditions is crucial to changing attitudes. What that looks like and how we structure it is a real debate, so lets start it shall we?

  15. Perhaps it would be useful to go back to the UNCRPD, and not just Article 19. The Convention speaks about independent living, but it also speaks about the right to work, to social protection and to an adequate standard of living; all these rights are inter-related. We could compare what this Government is doing/not doing/achieving/not achieving with the UNCRPD rights, but not independent living at this stage..

    I’ve recently been working on a report which focuses on the above-mentioned rights and I have had a couple of “lightbulb moments”. The most significant is the huge gulf in ethos and practice between a “right to work” approach and “welfare to work” approach to social policy. ESA, the WCA and the Work Programme are firmly located in the “welfare to work” model and I believe it is for this reason that they are all failing. What would the same policy areas look like if we used a “right to work” model, and also focused on the right to social protection and to an adequate standard of living?

    A WCA and work programme based on a “right to work” model would focus on aspiration rather than obligation and on employers as well as potential employees. A WCA, under this model, would look at the barriers to work in the round, including impairment, the need for reasonable adjustments and support needed. I would hope it would reflect the continuum between “fully able to work without assistance” through “able to work full time with assistance”, “able to work part time with assistance” and “unable to work due to the impact of impairment and other barriers”. The assessment would look at the impact of impairments as well as the availability of appropriate support, and other barriers such as poor skills, transport etc, and the nature of paid work. Those at the “unable to work” end of the continuum would be properly supported, financially, and the length of award of benefit would reflect the REAL clinical likelihood of change. The work programme would be devolved to small, local providers who would build relationships with local employers and identify support needs as well as gaps in education and skills, and would provide support to both employer and employee. It would broker access to support via Access to Work, which would be provided on the basis of what’s needed to dismantle the barriers. You get the picture…

    And what difference would an approach based on a “right to social protection” and a “right to an adequate standard of living” make to current policies? I believe such an approach would make conditionality and sanctions the exception rather than the rule, since they presuppose that people can live on fresh air. If people didn’t engage with the support offered to access employment, the focus would be on identifying the reason and addressing it holistically, not plunging them into destitution. I would hope the political rhetoric would also change; if there is a recognised right to social security, the fact that some people both need and receive out of work benefits because the barriers to paid work are just too great would be unremarkable. If they engage in voluntary work with whatever capacity and energy they have, that should be seen as a bonus, not a reason to haul them in to question why they’re not undertaking paid work!

    Overall, I would like to see the ethos of DWP change to one of ensuring disabled people can enjoy those rights set out in UNCRPD that are relevant to its policy area. There’s no problem with expecting disabled people to work if the barriers, both impairment-related and employment-related, are addressed, and importantly if work once again provides a route out of poverty (if work doesn’t provide a route out of poverty disabled people aren’t able to enjoy an “adequate standard of living”). But the overriding aim of DWP should be to ensure disabled people are able to exercise their rights to work, to fair and just conditions of employment, to social protection and to an adequate standard of living. If this ethos and this over-arching aim were in place, I think quite a lot would change, especially in the longer term.

    I wouldn’t like to comment on whether the failure to view policy in relation to human rights is “neoliberal”, but I do know that in the latter years of the last Labour Government and under this Government the concept of human rights appears to have had a decreasing influence on public policy, to everyone’s detriment. Respecting and fulfilling people’s human rights may be more expensive in the short term but I believe it would result in significantly increased well-being and might alleviate certain social problems that have arisen as a result of the policies of despair we’ve seen under recent Govenments, especially the current one. Er, rant over 😉

  16. Please see the replies above from Pat’s Petition to Liz and Neil. Is there any general support for the idea of a united campaign in time for the General Election manifestos for agreed emergency measures to make ESA fit for purpose?

  17. I agree such a campaign could be good; I’m just not sure how we will ever agree what those emergency measures should be!! Some of us believe that if the norms were removed then many of the other problems would be ameliorated, but not all agree with this approach. However, if a system of norms drives outcomes any other tweaks are pretty pointless – as I’ve pointed out to Kate Green! And the norms were put in place by New Labour, not by the Coalition, and when I actually tried to talk to Kate about the norms she tried to deny there’s a problem with this kind of audit/control process.

    If we do campaign to get rid of the norms, what we’re actually campaigning for is that every claimant should be treated as an individual and that the correct decision be made on their case. Whilst this is common sense decency to us, it’s revolutionary in terms of how the norms have underpinned the process from the start. But I guess what I’m trying to say is that if we suggest that every claim should be assessed on its merits, implementing that suggestion would involve the removal of a key linchpin of the process, ie the audit framework on which it’s built.

    Over to others!!

  18. An adequate standard of living and social protection are building blocks of inclusion; they are not alternatives to it. The fact that welfare reforms as presently being implemented threaten this right is an impediment to inclusion. Hence action to address what is happening in the short term need not be in conflict with our long term aims.

    That calls upon us to avoid employing arguments and tactics which appear to divorce social security from wider questions of inclusion – this is the elephant trap to which I refer, as it is precisely this false dichotomy that both this government and the last have helped create and which I’m concerned the position of Pats Petition and Tom risks only reenforcing.

    How can we do this? By, in my view promoting reforms which transform the gateway to disability related out of work benefits such that they take a personalised and rounded view of the factor shaping an individuals opportunities to move into paid employment – at the interaction between an individual with an impairment (taking account of the effect of the impairment and health condition itself) and the social and economic context in which they live their lives (including the scope to remove barriers and provide support in the local labour market).

    Doing so would not be in denial of the impact of impairment, or of the current unavailability of solutions to the barriers some might experience. By looking more holistically it would actually be more sensitive to these factors and hence to the unfairness and unhelpful (to individuals and to the aims of public policy) impact of subjecting some people, inappropriately, to conditionality. But through doing so it would focus on the individual, not abstractions regarding the impairment or health condition that they have which may or may not determine their potential for paid work, thus helping to avoid presumptions and stereotyping.

    Are proposals which do this – and which Labour appears to support in principle – beyond us to develop?

    • No they are not. However as I have previously suggested I think we need to move more toward a idea of work being more fluid. White collar professions, 9-5 and working in offices are all ideas that are being replaced. Therefore ‘work’ is becoming more fluid. Work is therefore more accessible than ever before. Personally, I do not feel that we do enough to highlight different ways of working to disabled people, e.g. freelancing, contracting and digital industries.

      I think there needs to be a concerted push toward more education around ways of working. I would for example, support benefits system that enabled a ‘top up measure’, which safeguarded for loss of earnings due to condition fluctuations but was not classed as a ‘unfit for work’ tag, as this might not be the case. Furthermore, I feel that having ‘unfit’ for work benefits creates a unhelpful culture of inhibition. Where we discourage people by labelling them as useless, which again is under the guise of this person cannot work 9-5.

      My real pet hate at the moment is Disability Confident. The concept itself is solid, highlighting role models is exactly what we should be doing. However when I saw the Glasgow one, they had Meggan Dawson-Farrell as an ambassador. Now I know Meggan and she is a lovely girl but she is a young wheelchair racer who has yet to leave college. I fail to see how she can be taken seriously as a work ambassador with no given experience? Where were people like Neil Barnfather?

      When I left university and went to self-employment, no one even told me about Tax credits, I missed out thousands because the information wasn’t decimated to me properly. That needs to change. There needs to be distinct shift to localisation so that people have one stop shop for the information that they are entitled to. I’d wager many part time workers who are disabled don’t know about Tax credits, I’ve certainly turned a few people in that directions.

      I also believe that the key to an improve welfare state is a change of lexicon. Welfare in this country has been corrupted. We need move toward a system, which is seen as an enabler. Right now, seeking welfare is almost seen as personal failure as so many have pointed out. Conversely claiming Child Tax credits is seen as perfectly acceptable.

      1. Top up credit.
      2. Local delivery partners.
      3. Continuous but not invasive, monitoring.
      4. Access to training.
      5. Self-employment enablement.
      6. No ‘out of work’ option.
      7. Proper role models.

      Again as people are living longer that carries with it the expectation of reduced functionality. Therefore the implementation of a welfare system that enables people to contribute to society for longer is vital. But has to be something that everyone wants and buys into. In Switzerland, everyone pays into a national insurance that in the event of a winter sports accident, pays a huge dividend. Only a small percentage of the population ever have need of it but everyone recognises the need for it. The additional revenue is used for research, advanced rehabilitation programmes and general advancement. There is no shame in accessing that insurance, nor does anyone begrudge paying into it.

  19. I agree that all the UNCRPD rights have to be implemented in the round if we’re to have inclusion; sorry if I gave a different impression in my rather clumsy comment! However, I definitely think that refocusing the overall aims of DWP would help; I believe it was the Public Accounts Committee that drew attention to the fact that DWP aims not to get people into work but to get people off benefits, which is a very different aspiration!

    A more individualised, holistic assessment would be good but I can’t see the likes of Atos HCP’s managing to deliver such a thing; I don’t think anyone considers the quality of assessor to be at all impressive!! I have to say that whenever I think of how a completely reformed assessment could look I come back to the problem that the calibre of assessors is a barrier to achieving any kind of skilled assessment or an equitable outcome. This indicates a deeper issue, about whether as a society we consider assessing people’s needs is a high enough priority to warrant care being taken to ensure that assessors are highly qualified and appropriately motivated.

    I can’t help thinking that our current political class simply doesn’t have the will to do any of this properly. In the short term, doing worthwhile assessments and providing proper support would cost more, and politicians only consider the short term. It seems to me that there is a huge change that needs to take place in public and political attitudes if we’re to have a system that treats people humanely as individuals. If politicians were serious about meeting the obligations in UNCRPD and the rest of the treaty framework we have a chance, but the change in approach will need to be huge if we’re to end up with a system that does what we all want. Sorry to sound so negative, but I don’t hear anything that positive from Labour either these days 😦

    • I respect you Jane but I do not think you should be accepting of the status quo. Tides can change, but against the battering of waves we must endure. We between us have the power to be real agents for change.

      Besides which, society is a in transition and will need our reforms more than ever before, very shortly.

  20. Neil says –
    Action to address what is happening in the short term need not be in conflict with our long term aims. That calls upon us to avoid employing arguments and tactics which appear to divorce social security from wider questions of inclusion …… I’m concerned the position of Pats Petition and Tom risks only reenforcing.

    Pats Petition do not see a conflict between long and short term aims.

    Do we all agree that ESA is a disaster? That the two groups are meaningless and that the test method is flawed.

    Does it help if we break down the problem into two: long term work towards resolution and inclusion and emergency short term care and concern?

    The short term crisis is about how to ensure that disabled people are safe until this crisis is sorted out. The only way to remove the fear is to relax the sanctions, remove the time limits and lose the absurdly low means test.

    Is this in any way in conflict with the long term aims of inclusion? Or are you saying that threats are part of a strategy to enforce inclusion, and that penal welfare reforms should be used to motivate disabled people in to trying harder to get work?

  21. But we can not let the ‘short term’ solution be an excuse to make assumptions disabled people can naturally be ‘unable to work” and allow the media basically ‘write it off’ as headlines, where it is immoral to want to include disabled people. The so-called short term solution can destroy the long term solution if it does not consider inclusion. ESA issues are only related to a section of disabled people, a battleground some of us do not deal with. It is wrong for everyone’s so-called inclusion to be framed in terms of the ‘right'(?) to be declared unfit for short term dependency, and so ignoring the wider issues of inclusion. So, there is a conflict if we continue to jump on the media bandwagon of poor disabled people ‘who should never be made to work’!

  22. Hi Frances – I had coffee with someone the other day who having read this blog and the comments said that people were too trenchantly of one position or another to ever find a common way forward, so I don’t know if I’m wasting my time responding (the discussion certainly has caused me to reflect on my engagement with these debates via social media and how fruitless it probably is, so this will be my final word on the debate triggered by this blog and I’m going to devote my time instead to seeking to make my ideas come to life). So here goes:

    No I’m not saying that and nothing in my blog, my responses or other things I have written – and that I know you have read – could lead you to conclude that was my view. The fundamental problem with public policy in this area is to have reduced the question to a matter of individual capacity and personal responsibility, ignoring all the factors which shape opportunity. This reduces the entire debate to one of who should or should not be the object of punitive sanctions, based on what we all agree (I think) is an abitrary and misleading measure of a persons capacity to work based solely on abstract measures of functional capacity (ability to put on a hat, etc) . I sense you are arguing that we have no choice but to accept these terms and hence only to argue that fewer people should be subject to conditionality – this could be achieve through getting rid of the norms, or through re-writing the criteria, or getting rid of the WRAG group, or keeping it but without financial penalties and a softer conditionality regime etc.

    I share your position – as I say in the blog – that people who are already enduring serious disadvantage should not be disadvantaged further through a punitive sanctions regime or loss of benefits income. What I challenge is your tactic of seeking to achieve this by declaring people intrinsically less competitive, or your new mantra ‘impairment that impairs.’ I do so because I think this is both unnecessary and counterproductive. Rather than challenge the basis of the WCA, it confirms it. It merely seeks some ‘boundary changes.’ And it perpetuates the idea that what dictates a persons potential is their health or impairment alone – the very basis of prejudice towards disabled people.

    I have said that I believe in a benefits assessment which looks at opportunities to work in the round – taking account of the impact of a persons impairment or health condition, their skills and experience, the availability of jobs, whether adjustments could be made or support provided. I believe this personalised approach would achieve two things. First it would make it less likely that people would face sanctions and benefit income reduction unreasonably because it would take a ‘real world’ view. Second it would ensure that the factors determining this question embodied the approach of the UNCRPD that ‘disability is an evolving concept and that 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.’ In doing so it would prevent the question of people moving from benefits and into employment being reduced to a question of the impact of their impairment or health condition or their moral agency and cast light on all the other factors shaping opportunity, for which public policy must find answers.

    I can understand why you would take the position you do, tactically, and accept that I may be completely wrong in thinking that what I set out is either a better way or even within the realm if possibility – my optimism knows no bounds. More fool me perhaps.

    Best wishes, Neil

  23. I should say I agree ESA has failed in how it has been developed, not so much because it is not enough people are being declared unfit, as the media assumed and we are all supposed to nod yes to, but because it is a stressful benefit that ignores people individual capability to be included as ’employable’ citizens with the ‘right’ support. I want ESA scrapped, see more here,,, http://simonstevens74.businesscatalyst.com/achieve-support.html

  24. Crumbs, I don’t think any of us agree with your last paragraph, Frances!! My problem is not that I don’t want short term as well as long term change, but that I struggle to see how we can get effective change of either sort, given the roadblocks in the way….

    However, removing the one-year limit on contributory ESA for those in the WRAG does not depend on changing the design of the WCA. Nor does increasing the ridiculously low income criteria for income-related ESA. And nor do the sanctions. So much of the short term action could be taken without changing WCA at all (although it does need changing, of course).

    My concern is that we’re trying to get concessions out of a system that is essentially punitive, and if DWP/JCP’s ethos isn’t challenged and changed any concessions might not be implemented as they need to be. I think that’s why I don’t feel optimistic 😦

  25. Neil, please thank your friend in the coffee shop for his insight. Please tell him we are going to do something about it and learn to work together. It is only by working together that we can prevail with politicians so it is worth going the extra mile.

    Academics have the luxury of being able to see both sides of every question. Politicians and campaigners often want to come down on one side or the other of a tension because they want to get things changed.

    Disability is infinitely confusing and baffling and different tendencies compete. Neil and Pat’s Petition seem to be in conflict over Inclusion versus Protection.

    This is a shame so let’s fix it. We all know that everyone is searching honestly for the Golden Grail and that there is a thread of truth in the arguments of the people putting the other side.
    Policies for Inclusion will be more secure if they factor in Protection and the ultimate Protection will come from Inclusion.

    There is no point in setting one another up as Aunt Sallys and attributing our own Inconvenient Truths to the other side. We both have Inconvenient Truths that we want to airbrush away to strengthen our side of the argument.

    Politicians have delivered such a disaster with ESA that they would like us to continue to fight among ourselves and self destruct so that they can look the other way. We will get nowhere if we split and divide and fight one another. We have to find common ground.

    So let’s call a truce and concentrate on the middle ground where we can all agree. It might start as a small rock jutting up in a choppy sea but it might grow in to small island and who knows in time in to the Promised Land.

    Can we declare the short term amelioration of sanctions, time limits and means tests as the first small rock in a new constructive partnership.

  26. I am in the uncomfortable position of sitting on the fence here. There’s much I could waffle on about, but basically my inclinations swing between ruthless practicality (which I think characterises much of Frances’ approach) and ambitious aspiration (which I know is Neil’s approach). I am uncomfortable with both extremes of this continuum and Frances knows that I am particularly uncomfortable with the idea that disabled people are intrinsically less productive (although I know she would say she means some disabled people, I’m still uncomfortable with the assertion). However, there is no doubt at all in my mind that ESA is badly broken because it is built on a fundamental misreading of the majority of claimants’ experience and motivation; anything that is built on a false premise is bound to fail.

    Whilst it does not use the language of “rights”, I am extremely impressed by a report published yesterday by Mind, written by Catherine Hale, who is herself in the WRAG and has bitter experience of how stressful and destructive that category can be. “Fulfilling Potential? ESA and the fate of the work-related activity group” can be found at http://www.mind.org.uk/media/933438/2014-support-not-sanctions-report.pdf and I commend it to you. After a very long day I’ve stayed up half the night because I just couldn’t not read to the end! Its findings do a pretty good job of bridging some of the gap between the two of you. The main barrier to obtaining work identified by the vast majority of those surveyed in the WRAG was their impairment or health condition, as opposed to poor motivation and a culture of dependency, which is the false premise on which ESA is based. However, the majority of respondents to the survey believed that a focus on motivating and supporting employers, reasonable adjustments, agreeing an Access to Work package up front, flexible working, annualised hours, working from home etc would give them a much better chance of getting back to work; the problem is that none of those are routinely on offer through the Work Programme or JCP standard support because these programmes are focusing on an imaginary problem and ignoring the real barriers. In other words, the reality for many of those in the WRAG is actually that their impairment is a significant barrier but in many cases a different conception of what work is, is perceived to be capable of overcoming it.

    There are many elements of the current set-up that get in the way of a rights-based approach, and it seems pretty clear that it is support, rather than sanctions, that is needed. My own view is that a rights-based approach feels right but that we need to ground such an approach in reality and political realism. This is one reason why the report impresses me so much; I believe it will be of interest to everyone who’s contributed to this discussion.

    Best wishes to all!

  27. I’m a bit fed up of the assumption that if someone is presumed to be disabled and given the automatic right to claim benefits they are somehow being “disempowered”.
    As a single mum I used to have an automatic and unconditional right to claim supplementary benefit. I assure you that this was not in any way disempowering. Having an automatic right to benefits is very empowering. If you want to get your living some other way, and can, the availability of benefits does not prevent that. It makes taking employment less risky because if a job does not work out the benefits are there to fall back on.
    What is “disempowering” is the modern regime of conditionality – where someone else decides whether you should work. That’s closer to slavery, a system generally regarded as not “empowering”. I take great exception to the comment that disabled people “should” work. The notion that “work” is morally desirable – especially for other people – is a modern sacred cow which belongs in the trash-can.
    Why on earth would we develop machines, computers and civilisation itself if we didn’t want to spend more time having fun and less time working? Disabled people are no different from able-bodied people in this respect.

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