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

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

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

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

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

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

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

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

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

immediately create for us a vested financial interest in claiming what becomes our main asset “disability”. In addition, since the amount of (State) charity will be determined by the degrees of disability, physically impaired people will also have a vested interest in playing down our abilities. The best financial contribution we could make to our families would be to become, or pretend to become, more dependent.’  

Finkelstein went onto argue:

‘The State, of course, will automatically be in conflict with us for it will seek to limit its handouts, otherwise there would be no one at work. State Charity, therefore, creates a conflict of interests between the State and its social administrators on the one hand and physically’ impaired people on the other. Thus the Alliance logically sees the need to establish objective criteria which would enable the State’s social administrators to determine the “degree of disability” and to exclude the malingerers from benefit. A whole new generation of researchers and testers will be created to administer the (disability) incomes policy…’

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

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

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

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

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

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

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

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

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

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

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

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


15 thoughts on “Why it’s time disability rights activism got its mojo back.

  1. Yes, we need to get back to a rights-based agenda. However, it is simply not feasible to seek to separate welfare for those who are too sick to work from support for those who could work with the right combination of financial and other kinds of assistance – and, crucially, empowerment and support for employers. We need a more nuanced approach for now, rather than trying to return to a “golden age” of yester-year. But I’d not seen Vic Finkelstein’s writings before today; they are more pertinent now than they ever have been.

    In conclusion, I don’t believe it is possible to separate the right to work from the right to sufficient support when unable to work. For one thing, the impact on mental health of destitution or near-destitution, or the massive stress of trying to avoid destitution by fighting DWP and its corporate assessors, is not conducive to getting into work. If Labour is elected, I do hope they focus on both these priorities, because both matter more than anything, for disabled people and people with long term health conditions. However, their recent public comments have been ham-fisted and inept; I want to see competence from Labour in this area, not inept comments that merely serve to frighten a substantial portion of the electorate!

  2. Thanks Neil, this is a much-needed and well said article. We can see the trenches between the rights and the welfare campaigners, and similarly back to 1920s and I suspect earlier.

    I do wonder if a minimum income would help here, especially if it was nuanced to cover the extra costs of impairment? Right-wing economists will shudder, but it seems to me that means-testing is the flaw, because it puts welfare in opposition to employment. You are on the money when looking at the flaw in New Labour’s Treasury model that benefit savings would fund rights programmes. Remember DEL-AME swaps? Equally, too many politicians argued (dangerously as it turned out) that higher rates of disabled people in employment would mean less demand for benefits and less call on the public purse for social care.

    So, I wonder if the way forward is a minimum income model – which is either adjusted for impairment or is alongside social care free at the point of use. The first option is money focussed, and the second gives a stronger role to the public sector.

    (Of course, a minimum income then requires a higher rate of tax for those who earn more.)

  3. The one main area where i think we are going wrong is this:

    Work is being seen such ridged terms – we talking about work in terms of 37.5 hrs a week, 5 days a week. We do not seem to entertain people working flexibly in line with their conditions. We are continuously fit/unfit, its all very black and white.

    This is at a time, when the world of work is as fluid as it as ever been and there are more opportunities to earn a income than ever before. However, if I am told that I am unfit, where am I to go from there?

    I genuinely believe that if you have condition which is semi-stable, you are capable of making a contribution to society. Indeed you must be empowered to do so. With my work with Ethos, we now talk in terms of community engagement. No matter what your condition – you can engage with your community. This engagement might be paid at some points and at others it might not be. The state has a role to play in putting structures in place to support that engagement.

    We cannot simply write people off as being unfit. We cannot continue to simply push a welfare agenda. We must ensure that people with long term conditions are empowered to engage with their community, that they have the tools, the path laid out in front of them and the role models. The role models I think are key – we need the visible leaders that create aspiration and expectation amongst our peers.

    This is something that cannot be achieved solely by lobbying for policy change. It runs deeper than that, it is by having the leaders within our communities that we can create lasting change. It is something I practice day to day and something I will continue to do.

    In terms of how this affects benefits – stop penalising people based on rigid tick box exercises. Move to local commissioning teams that continually work with people. Involve and create community leaders and judge people by holistic measures of wellness. We need to start looking at safeguarding peoples’ mental health and crucially involve your role models at all levels of the process.

  4. My comment could have been read to mean that I don’t really mean we need to get back to a rights-based agenda – since I only mentioned that in one line at the beginning! In fact, I do very much believe that we need to move from “work as punishment” to a “right to work”. One of the problems we have is that we are in an economic milieu in which there are far too many “bad jobs” – zero hours, minimum wage, insecure employment – when for everyone, but perhaps for disabled people in particular, we need to see the creation of “good jobs” – that provide reasonable salaries, the ability to negotiate reasonable adjustments without fear and employers who receive support to take on the “unknown”, having not (knowingly) had experience of employing disabled people. This is the opposite of the current “race to the bottom” capitalism, and needs to be nurtured by a forward-looking, progressive Government.

  5. Hi Jane – I agree with you, although I also think we need to consider the opportunities that are also being presented in terms of a greater diversity of working arrangements that might open up employment to those hitherto excluded by the typical 5 days a week 9-5 arrangement? How can a flexible, enabling welfare state underwrite people doing what work they can when they can and hence take advantage of some of the opportunities such a labour market presents? Which I guess is what Lois is alluding to as well?


  6. “But here’s the thing: disability rights has little specifically to say about the welfare of people who are sick.”
    Yes, and maybe that has been a problem for a very long time. Because people who are “sick” (and I would very much like to see how you make a clear and distinct difference between the two) are often also disabled, yet have traditionally been totally ignored and unrepresented by the wider disability community.

    “How we as a society address the social welfare of people who are too sick to earn a living income through paid employment seems to me an urgent question. But for the reasons outlined I increasingly believe that it is one that lies beyond the scope of disability rights and I don’t think we need to try to reconcile these objectives. ”
    There is so much wrong with this that I hardly know where to start.

    First off you assume a black and white division between sickness and disability. You previously in your article kindly allow sick people to pick up the crumbs from disability rights, but don’t recognise any potential or input they/we may bring to the table, not just about welfare but in many other areas too. Patronising? Paternalistic? I thought these were the very things you were fighting against.

    Secondly you appear to assume that earning a living income is the only thing that matters and everything should go towards this goal. Since when?
    But lets assume for a second that earning a living income IS the only thing that matters. Setting “sick” people to one side is against everything you and every disabled person should be fighting for. Being “too sick to work” for the majority is again, not something which is black and white, yet the system we now have is. This is something which must change.
    How can we do that if the wider disabled community wants to once again set us aside as an inconvenience rather than seek solutions which will allow us to participate, perhaps albeit on a limited basis, either as volunteers or in the workforce?

    Thirdly, for those who cannot (either temporarily or likely for a very long time) earn a living income, financial support is just that: support. I consider it no differently to the social care support I receive to help me get up and dressed in the morning. I do not view it as “compensatory”. In fact I find that statement, which you have made many times, highly offensive. Is a wheelchair “compensating” me for not being able to walk? Or is it supporting me so that I can participate in society?
    The financial support I receive allows me the basics to live and therefore to participate in society to the best of my ability. Nope, this participation is no longer financial. But it matters. Without the financial support it ends, right there. And THAT is why welfare is part and parcel of disability rights. Without it a whole section of disabled people are cut off from society.
    But you seem ok with that. Why? Because we are inconvenient to your discourse? Because we do not fit your ideal profile of a disabled person?

    I do agree that welfare should not be the ONLY topic. I think you know that I have always said so. But to ignore it completely is to turn your back on tens if not hundreds of thousands of disabled people, which, as you pointed out, is something that has already been done for most of the twentieth century. I would have hoped that we would be more enlightened in this one.

    • Hi – thanks for your comments. I’ve no doubt this is a consequence of the lack of clarity in my writing but the first thing I should say is that the focus of this post was welfare activism, not on the rights of people to social security. Nor am I arguing that ‘sick’ people are a separate group that should be cast aside (I have previously argued the precise opposite). What I am arguing to be incompatible are agendas pursuing disability rights and inclusion and those interested solely in ‘welfare’ as I believe they are pulling in opposing directions both in their goals and their tactics and moreover that the latter has come to dominate at the expense of a viable disability rights agenda of the sort we had begun to establish before the financial crash. I say very clearly that social protection and an adequate standard of living are part of such an agenda, not separate from it.

      I apologise if you took offence at my distinguishing enabling benefits and support from compensatory ones. This was a comment on the nature of the benefit itself and the criteria governing entitlement, not on recipients and how they might strive to use the money. I think these comments from Vik Finkelstein (from 1974) are highly pertinent: https://makingrightsmakesense.wordpress.com/2014/08/31/its-like-de-ja-vu-all-over-again/ I do not believe the cost of support should be to enter a state of suspended animation. As I have said before I would like to see a wholesale shift away from all ‘deficit based’ approach to allocating benefits and services to one founded on investment in people. All people.

      Best wishes, Neil

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

    You say this as if its a bad thing.

    ESA is the ONLY sickness benefit.

    I suggest the stable-and-able go onto JSA, which, if you are on DLA, has a disability premium that equates to ESA.
    On JSA the stable-and-able get the dedicated and superior Work Choice.

    Sick people didnt mug disabled people of a benefit – they simply tried to stop the only sickness benefit available becoming a disability only benefit.

  8. I don’t regard it as ‘a bad thing’ at all, and in fact I’m unclear why my comments are being construed as a criticism of those who have campaigned against welfare reform, when in fact they are a critique of the failure of the wider disability community to reboot disability rights and push forwards a broader agenda.

  9. You dont understand why your comments are construed as a criticism? Neil, you felt the need to term people with chronic and long term health conditions as sick, AND felt the need to use the good old cynicism of placing it in inverted commmas!

    You’d get a bit narked if I refered to you as ‘consultant’… or ‘disabled’ people.

    And thats just for starters…

    You also have to remember that we didnt set out to reboot disability rights – we set out to highlight the disgusting welfare reforms.
    We have worked as hard on PIP as we have ESA. We have no bias – if it stinks we scrutinise it.

    Maybe yes, some people have not been as nuanced in their presentation as you may wish – but when faced with a black and white issue a nuanced response is not what is called for.

    Maybe the academics and ‘consultants’ have both the time and the spoons to indulge themselves in ‘rights’ – we dont have that luxury. We’ll put the roof on the house, and you faff around with the interior design – because quite frankly all the rights in the world mean squat when you have no roof over your head.

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