Why disability equality need not be the price of defending the welfare state

Over the past 24 hours I’ve had some interesting, if not rather heated, discussions on Twitter regarding specific question of ‘sickness’ and ‘disability’ and the degree to which each gives rise to a need for different policy responses and/or demands a different ‘narrative’.  I thought I’d try to articulate my views without the strictures of 140 characters and invite people to comment and engage in a discussion via this blog or elsewhere if people so wish.  I’d also like to start by thanking people for taking the time to debate the issue with me through which I have both learnt a great deal and been able to develop my position and to apologise for what in retrospect was an unfair and overly hasty dismissal of the document from Pats Petition (more of which below).  As a member of Labour’s Poverty and Disability Taskforce I also wanted to write this to give people assurance about where I am coming from.  So here goes:

1. Disabled people and people with long term health conditions can face an income penalty because of labour market disadvantage or because the effects of their impairment or condition make sustainable employment temporarily, periodically or permanently unattainable, or because of a combination of both.  This – along with other factors such as prior socioeconomic disadvantage, discrimination associated with age, gender, ethnicity, or where somebody lives can lead to poverty and because that poverty may be endured over a long period, to material deprivation.

2. Disabled people and people with long term health conditions can face a cost of living penalty because their impairment or health condition gives rise to costs which others do not face.  This places them further at risk of poverty and this poverty is not recognised in official measures. This costs of living penalty is a barrier to participation, including in employment.

3. The job of public policy is to address both the income penalty and the costs of living penalty.  It needs to do so through optimising opportunities for people to secure sustainable paid employment, through financial transfers via the tax and benefit system to address the income penalty, through measures to make people more financially resilient and through action to both minimise and contribute towards extra costs.

4. People who cannot raise an adequate income via sustainable employment need an adequate income to live on – one which ensures their well-being, prevents material deprivation and promotes financial resilience.  They should also benefit from policy to address extra costs arising from their impairment or health condition.

5. Some people have health conditions which give rise to fatigue, pain, vomiting, confusion,  breathing difficulties, dizziness and distress for example.  Together these – what we might call  ‘states of being’ – are described by some as ‘sickness’.  It has been suggested that people who experience such ‘states of being’ should be described as ‘sick people’ in order to differentiate them from ‘disabled people.’  The rationale for this separation is to draw attention to their situation – which it is argued is under or mis-recognised by existing policy and practice – to ensure that they are not the object of unreasonable expectations which it is argued the modern disability rights agenda can give rise to and in particular to ensure that they are not subject to conditionality and that they receive additional payments via Employment and Support Allowance.

6. We must in my view ensure that policy recognises the ‘states of being’ referred to as sickness and their impact.  We must ensure that people who experience them are not the object of unreasonable expectations which threaten or undermine their health and well-being and that they are provided with an adequate income and whatever other support they require to achieve well-being and to participate.

7. But I don’t believe we should or even can distinguish between ‘sick people’ and ‘disabled people’ as some suggest.  Many people would fall into both camps as Jenny Morris explains here.  People who become sick also experience discrimination and socially constructed barriers whether in the labour market or in accessing goods and services.  The fact that they may not actively be pursuing employment at a particular moment does not mean the question of employer discrimination or labour market disadvantage is rendered irrelevant.  Many people’s health conditions mean they can and would like to work sometimes and not others. We should be seeking to open up opportunities for everyone who wants to work and we need to better understand and address the barriers people who experience sickness may face.   People who are sick should not face discrimination and should enjoy the same rights accorded to other disabled people.  Saying that and pursuing it is quite different from obliging everyone to work.

8. On reflection I was far too hasty to dismiss the document from Pats Petition for which I have apologised above.  They also want to overcome the avoidable tension between promoting opportunities on the one hand and subjecting people to unreasonable expectations on the other.  A more sophisticated system will underwrite risk-taking and all forms of contribution, not penalise people for trying out work or for working when they can.  Belonging to the ‘support group’ should not demand that people enter a state of ‘suspended animation’, just as belonging to the WRAG group should not render someone the object of pointless, unproductive yet extremely damaging sanctions regimes or failing ’employment support’.   And we must as they say look beyond the ‘push’ factors and address the ‘pull’ factors in the labour market itself.

9. Just as we need to avoid generating unreasonable expectations though, we also must avoid perpetuating negative stereotypes.  This is why – even though there was much to commend in the document I recoiled at ‘Jobs are acquired through open competition: it is like asking disabled athletes to compete in the mainstream Olympics’  When employment support providers are ‘parking’ disabled people and going for the ‘low hanging fruit’ instead and when employer discrimination is often rooted in low expectations, statements like this – designed to protect people –  also serve to feed prejudices and provide excuses and justification for disabled people’s exclusion from the labour market.  While we must be realistic and avoid putting people in harms way, we also at all times must promote – to use the words of the UN Disability Convention – the ‘capabilities and contributions of persons with disabilities.’  This is a major tension that we all should have an interest in trying to overcome.

10. I think we should avoid promoting ‘equality for those that can; social security for those who cannot’ and I believe that we can if we begin articulating a fresh inclusive agenda under the banner ‘dignity and opportunities for all’.  Everyone requires an adequate income which accords them dignity and well-being, and everyone wants to be their best, no matter what being their best means.  We all want there to be public resources which invest in people. Let’s not allow this government’s assault on the welfare state lead some campaigners to an assault on disability equality.

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9 thoughts on “Why disability equality need not be the price of defending the welfare state

  1. This is really helpful, Neil, and well reflects our discussion on Monday. I may well reblog it, with additional thoughts, on my own website. However, the really thorny bit is the part you haven’t mentioned – how do we construct a system that correctly identifies when someone needs support in overcoming external barriers and when they need unconditional support because the barriers created by their own health condition or impairment make work impossible? We have to admit that there ARE people who want to defraud the welfare state, even though these are a minority and most disabled people want to work, even those who can’t at the moment do so – or may never be able to do so.

    It’s really important to recognise how terrified some disabled people are that they will be forced to engage in activities that will harm them in order to maintain sufficient income to live. Whenever we talk about equality of opportunity, we must also make sure we remember that for some, their impairments (illness, sickness) are such that they need to concentrate on living, without the unrealistic prospect of work they can’t cope with.

    Recognising that some people have “internal” or “intrinsic” barriers to work, that come from their impairment or illness, as well as external barriers (as per the social model) is, I believe, the key to this. More work will now need to go into how to assess these correctly; I think part of the answer is to have Access to Work and other types of employment support much more closely engaged with the WCA (or its equivalent), which should make such an assessment much more practical and make it very obvious where such support cannot remove barriers (often because the barriers are internal/intrinsic and result from the claimant’s condition).

    We need to keep thinking and talking!

    • didn’t the work focused health related assessment seek to do that in some small way? the torys scrapped that. I wonder why that is, hmm, because it found disabled people were actually, um, disabled?

  2. Mental illness is so rarely mentioned and I’m unsure where it fits into the debate for equality and support?

    “We must in my view ensure that policy recognises the ‘states of being’ referred to as sickness.”

    A (psychotic) mental illness such as schizophrenia could certainly be classed as sickness but an (neurotic) anxiety condition such as social phobia, panic disorder, agoraphobia for example, are disabling and impair function even if the person feels quite well physically. The cause is of these conditions is unknown though it’s arguable that they’re a conditioned, psychological response to stress and triggers, rather than a medical problem. These mental health conditions should be classed as disabilities? Diagnostic criteria class them as ‘disorders’ rather than ‘mental illnesses’.

    I believe that half of claims for ESA are due to mental health problems and therefore they should have a greater influence on policy making in regards to social security and equality needs. Only 21% of people with disabling mental illnesses/conditions in are in work, less than half of those with other disabilities and this falls to 9% when the illness is severe, though it’s suggested 90% want to work. If a jobseeker with a mental health problem has been out of work for over a year the chances of them ever finding work is practically zero. Employers are far less likely to want to employ someone who has a history of mental illness and they’re more likely to be discriminated against and stigmatised.

    If you’re trapped at home with an anxiety condition and you’re limited to certain familiar places where you can go without significant mental and emotional distress, or you can’t get out even with support, the prospect of being placed on a work programme and forced to look for work is absolutely terrifying and frankly, impossible in many cases. Yet the desire and need for employment is strong. Where do these people fit in? The current system doesn’t recognise their needs and ignores psychological barriers to work and participation on the whole. Worse, only one in four people with common mental health conditions get access therapy and if it’s not caught early the likelihood of recovery is poor. No treatment and inappropriate support to work is creating misery and compounding their problems. People with mental health problems are more likely to live alone, have fewer friends and experience isolation. Throwing them in at the deep end is the wrong approach. Baby steps are needed, counselling, support, therapy, exercise, leisure courses to build confidence and social skills perhaps, access to higher education, on their terms within their comfort zones. I simply feel that mental illness is stuck between sickness and disability, between discrimination and equality and as so many people suffer with it, one in four, or one in every three households, it should be spoken about more openly and directly. It’s bad enough that it’s a taboo in society and it shouldn’t be taboo in the fight for social justice.

  3. Your contribution is really helpful and important, Nessie. I think one problem is that those of us who haven’t experienced significant mental ill-health or mental disorder simply don’t think about all those who do. The rather in-between position of mental ill-health and mental disorders illustrates very well that we mustn’t categorise people, but address them and their difficulties on an individual basis. I know the WCA performs appallingly in relation to mental illness and disorders, which means people with this kind of difficulty face the demand to jump through impossible hoops, which will do more harm than good.

    Whilst there are plenty of internal, or intrinsic barriers facing people with mental health difficulties, – their symptoms, the activities they find impossible – one of the principal external barriers is employer prejudice – in other words, pure discrimination. People with a history of mental health difficulties need the protection of equality legislation almost more than anyone else, especially in relation to employment. There is no reason why someone who has had a mental health condition in the past can’t work, but as soon as employers discover that in someone’s history their prejudice is revealed and the barriers go up.

    Some mental health conditions may also lend themselves well to “reasonable adjustments”; for example, if an employee can’t travel in rush hour when public transport is really crowded, flexible working could enable them to travel at a time when they can cope with the journey. If someone with a mental health condition is only able to leave the house some of the time, a “reasonable adjustment” could be to allow that employee to work from home when he or she can’t travel.

    I think Neil’s phrase “state of being” is useful; many people with a history of mental health difficulties will go through different phases of their lives; when they’re really not well they may not be able to work at all, but when they’re relatively well there should be no reason why they wouldn’t work. And if, as you say (and I totally believe you!) 90% of people with a history of mental illness want to work, it’s so wrong that they’re prevented from doing so because of employer prejudice.

    I haven’t provided any solutions, but I hope I’ve reassured you that with a flexible, nuanced approach of the sort Neil is suggesting, it isn’t too much of a problem to consider how such an approach could help people with mental health difficulties to participate, including in paid work when they can. But there is one more issue; the threat of sanction, however subtle or “reasonable”, will always be especially counter-productive for people with any kind of stress or anxiety disorder. It beggars belief that the Government thinks a coercive, punitive system will enable people with mental health conditions to work – on the contrary, such a system appears to be designed to have a negative impact on mental health!

    • Thank you Jane. Well said! I’m pleased that we’re discussing mental ilness. How appropriate on World Mental Health Day. Even if you don’t think about mental illness very often, it’s clear that you do understand the difficulties. I agree that stigma and employer discrimination are preventing people from moving forward, which is a gross injustice when they’re recovering and feel well. The 90% figure was from here http://www.nmhdu.org.uk/silo/files/nmhdu-factfile-6.pdf though though I know you believe me.

      Barriers to work for mental illness are varied. The distress experienced with phobic and anxiety disorders is a symptomatic reason, whereas with other psychological conditions, mental illness, barriers are created by stigma and misinformation. Some people may be quite independent and others need a great deal of assistance and support. The support group is the best option for many because they cannot meet the conditions of the WRAG and yet the support group offers them nothing, as Neil has pointed out. Forcing people into work activity that they can’t cope with and makes them more unwell is punative and cruel. The prospect of destitution won’t threaten anyone into recovery but it wilI place a greater burden on already over-stretched crisis care. I don’t know if PIP will be more accessible for mental ill health as the government has promised? DLA was very difficult indeed to claim and the Blue Badge scheme is utterly discriminatory.

      Mental illness can cause physical illness and vice versa. I do agree that we shouldn’t categorise people but as I say, mental illness does need to be referred to more. Sickness, disability …and mental illness? Or not!

      We know that the tick-box one size fits all WCA is a catastrophe for people with mental ill health. The court ruling regarding the lack of evidence means thousands have been discriminated against and unjustly assessed. Each person should be assessed as an individual with a balanced approach to their needs and abilities.

      Ending the stigma surrounding mental illness is vital. We want to promote equality of opportunity for all. On the other hand we are campaigning to stop essential support from being stripped from us. When the only way of getting that support is to prove you’re dependent and incapable, the message that ‘we want to work’ would be used to undermine us.

      Thank you so much for this important post and discussion, and the opportunity to share my thoughts.

  4. Hi Jane
    Breakthrough UK and others (sponsored by ODI) are doing some interesting pilot work around Access To Work , essentially testing out how peer support service could help in making the assessment and procurement process much less medicalised and more creative in terms of outcomes See: http://www.breakthrough-uk.co.uk/aspire

  5. Can’t argue with that. The point is that illness and impairment are very very variable, by kind and by degree. Some people are limited as to what work, if any they can do, because they have intellectual impairments. Some people are limited as to how much they can do, because they have fatigue, pain or other symptoms. Others have fluctuating conditions, such as mental health issues. Many many people can only work part time. And some people can work fine for a period, but then retire early because of the onset of symptoms. All of these people need a benefit system that does not just recognise the extra costs of their impairment/illness, but also compensates them for not being able to work the 37 hours good quality job till normal retirement that the average adult can aspire to. Differences between disabled people have been neglected in disability rights activism and disability research for too long. Removal of barriers and reasonable adjustment is only the starting place from which to ensure that everyone has a decent standard of living and freedom from insecurity.

  6. This is a very complex topic that, in some ways, I am hesitant about contributing to – while at the same time, the current rhetoric, not to mention the current actions of the government, are causing me quite a lot of concern I am not myself disabled; what I am is a long term carer for my daughter, now 35, and brain damaged by an accident of birth.

    It seems to me that it IS important to distinguish between people who are ill, and people who are disabled even though there are circumstances where both are relevant. What is needed, it seems to me, is a lot more clarity and precision in defining just what ARE the barriers to work and the sources of discrimination, while the present government is hell bent on ignoring them.

    We are all experts on the particular problems we face as individuals, but I am beginning to find some of the rhetoric of “rights” quite scary. My daughter’s disabilities are largely the physical consequences of a damaged brain, labelled from birth cerebral palsy – but she has little in common with other people with other forms of cerebral palsy that do not lead to intellectual, language and behaviour problems. From “transition”, the label changed to Learning Disability – which generally means that her physical problems get forgotten about. Some of her behaviours would put her on the autism spectrum, but that that then gets her subsumed into the group who are regarded as mentally ill doesn’t seem too appropriate either. My point, I think, is that there are groups of categories of people who may have similar problems and need similar solutions, but a one size fits all solution of “work” as the answer seems a bit simplistic. Is she Capable of Work, of contributing, of earning the support she needs? Debatable, to put it mildly.. When ATOS finally gets round to her, anything is possible. At one level, she is barely aware of the concept of “work” and certainly doesn’t aspire to it – because with the parts of her brain that still function rather well, she would understand that the kind of work the government has in mind should not be expected of someone struggling with the consequences of what happened to her. She should if there is any rationality left end up in the “Support” group – accepted by the Daily Mail readers as one of the “genuinely” disabled, the deserving poor. But then what? Charity and gratitude?

    The debate being framed here is an important one; if it were conducted in a context of benevolent employers and real concern to find answers then perhaps everyone’s needs could be addressed. But it isn’t.

  7. When Lord Freud made the case for the Welfare Reform Act 2012 it wasn’t the science that sold it to the Politicians and the electorate. It was the implication that disability was psychosomatic which allowed politicians like Osborne, IDS & Cameron to sell the electorate the idea that “we all know someone down the pub”, ripping off the welfare state for the generous “something for nothing” benefits. Thus the myth of the “Disabled Benefit Scrounger” was born.
    Neil’s campaign phrase of “dignity and opportunities for all’ is something I believe we can all unite around and is not far away from the plea for “a better, fairer way to support and give opportunities to disabled people” which WOW pleaded for at the recent Service of Remembrance in Parliament Square, for the 10,000 plus people that have died within 6 weeks of being forced to do a WCA. Let us not forget that some prominent campaigners for the Rights of Disabled People have shepherded disabled people towards the Government’s Work Programme in the past and that all major Political parties have supported this approach.

    Before I continue, there is a point to be made here that not all sick and disabled people can work and the causal impairments that cause this are much much more than those accepted by the WCA at the moment. My view is that every member of society should be provided with a basic level of state funded income but that people should be encouraged to work if possible through the “carrot” rather than the current “stick” approach. My points below are therefore directed at this sick and disabled people that are both able and willing to work, stressing that being willing to work is not always a conscious decision. I am also basing my comments on the integration of sick and disabled people into society through employment opportunities.

    I believe that the message we give should not be based on whatever fashionable model of disability is in vogue at the moment. It should be based on what is RIGHT!
    Did Martin Luther King base his emotive speeches on a fashionable model of why race discrimination is wrong? Is our fight a million miles away from his? Are disabled people discriminated against because they are less than non-disabled people or because they are different?
    Disability is not a model to me. It is a way of life.
    Asking for more Training, Education and Skills to be transferred to sick and disabled people is to me a no-brainer, as in my opinion everybody needs to improve their skills and ability to add value – sick people, disabled people, yet to be disabled people , young, old, men, women, Africans, Asians, Europeans, Americans I could go on! However, will being better qualified/ experienced really solve all of the barriers to work we encounter? I hope we are not suggesting that sick and disabled people have to be more qualified and experienced in order to secure employment as in my personal experience being over qualified is a major barrier to empoyment?
    Trust me when I say lack of qualifications, experience, skills or ability is not a barrier to working for me personally. People liking me or relating to me or being scared of me or not understanding me or assuming things about me or using office politics to highlight why I am less than them ARE the barriers. The Equality Act 2010 addresses removing many of the barriers to Disabled People fully participating in Society but hasn’t addressed the “hearts and minds question”.
    As long as society gives us “Equality of Treatment” Society will expect us to react to things in exactly the same way as them, because we argued to be treated in the same way as them. We have to re-frame the argument so that we are demanding Equality of Opportunity. No matter how educated, qualified and experienced you are, if people don’t want any of “those disabled people” working with them you won’t be working with them unless they are convinced differently (be it by legislation or public opinion etc). Supply side measures are welcome but in my opinion won’t help generate opportunities for talented disabled people.
    Just as I think equality of treatment was the wrong target I passionately believe that by focusing on supply/ push side measures to get more of us in employment, both if we can or want to we, we are promoting a model that is doomed to failure. Why work hard to improve yourself if the opportunities don’t follow the effort! My belief is that you should “Build it and they will come”. (With apologies to Kevin Costner).

    Finally, I am different from most of you. I did not choose to be different but I expect society to make reasonable adjustments to account for my differences and give me Equality of Opportunity..

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