Self-determination and citizenship: out of reach for disabled people?

[This is the text of a talk I gave at Norah Fry Research Centre, University of Bristol, on March 10th, 2016]

When I was asked to do this lecture it was suggested I do something about disabled people and citizenship.  Around about the same time, I had a conversation with a hairdresser (as you do) and also listened to a You and Yours phone in (as I try not to do), both about citizenship.

The hairdresser was a young Iranian woman who was applying for British citizenship having been here for five years or so.  I asked her why she wanted to settle in this country, given that all her family were still in Iran.  She said that firstly she felt safe here and secondly, even though things may be improving in Iran, she thought it would be many years before it became really democratic.  I asked her what she meant by ‘democracy’ and she talked about ‘a government that looks after its people’.

The You and Yours phone-in asked people who had come here from other countries and become British citizens, when they first felt like a citizen - and almost everyone who phoned in talked about a feeling of being accepted, and of belonging. 

So together the hairdresser and the You and Yours contributors conjured up a picture of a society where people are accepted for who they are, a community to which you feel you belong, where you feel safe, and where you know that your government will act in your best interests and will not harm you.

I was particularly struck by this because I increasingly feel that more and more disabled people do not feel safe, do not feel accepted for who they are, and where our government seems to be acting in ways which - far from being in our best interests - actually harm us. 

I also thought I would revisit the paper I wrote about citizenship and disabled people in 2005 for the Disability Rights Commission (DRC). That was also the year that the government published a 25 year strategy to improve the life chances of disabled people, setting out the aim that:

“By 2025, disabled people in Britain should have full opportunities and choices to improve their quality of life, and will be respected and included as equal members of society.”

In the DRC report, I argued that there were three aspects of citizenship: self-determination; participation and contribution.  And that self-determination was critical because without self-determination we are held back from both participating and contributing.

So what do I meant by ‘self-determination’?  It’s about making decisions for yourself, what is often called autonomy. For example, in making the case for people with learning disabilities’ rights to citizenship, Simon Duffy states, “Put simply, if you have self-determination then this means you are in charge of your own life. If you do not have self-determination then other people are in charge of you” (Simon Duffy, 2003, Keys to Citizenship, Centre for Welfare Reform, p.5).

Being in charge of your own life - making decisions for yourself - is not a simple matter if you require assistance to go about your daily life, particularly if you need assistance to communicate and to express your preferences. Self determination for disabled people is not only about removing barriers - what people often call ‘negative rights’, a right not to be coerced to do something.  It’s also often about having the right kind of assistance so that your choices can be put into action. So, for example, detaining people with learning disabilities in long-stay hospitals creates a barrier to self-determination but closing down the hospitals is not sufficient to enable them to exercise choice and control over their lives. They may also require support to make choices, set up home, manage their own money, seek employment, and so on. And they won’t be able to make decisions for themselves if their previous accommodation is merely replaced by another form of institution. They will need, instead, to have somewhere to live where they can make the ordinary choices of daily life. Not only that, but the community in which they want to live may need to make some changes themselves because, in many cases, changes in attitudes will be required so that people with learning disabilities are welcomed and accepted.

For disabled people therefore, self-determination cannot be achieved without positive rights - rights to action to be taken by other people, organisations and by society in general.  The UN Human Rights framework recognises these kinds of economic, social and cultural rights and the UN Convention on the Rights of Disabled People sets out how disabled people require specific action in order to have access to the same life chances as non-disabled people, particularly in Article 19 which concerns independent living.

So how is our society currently doing at promoting such positive rights, rights which are essential if disabled people are to have access to full citizenship?  More specifically, what is our current government doing, on our behalf?

The answer to that question is, unfortunately, that current government policies  are removing the assistance required to promote our self-determination, participation and contribution.  And in the process, people feel less safe, are more likely to live in poverty, are denied opportunities open to others, and in some cases have shortened life expectancy.  Government policy, in other words, far from promoting our citizenship, is actually doing us harm.

I’ll just briefly discuss two policy areas before going on to identify what I think are the fundamental problems underpinning and driving these developments.

“Getting disabled people into work” is currently the main focus of policies which are supposedly intended to enable us to be full citizens, and reduce the risk of living in poverty. Welfare reform is the mechanism to do this, fuelled by the assumption that the primary barrier is - not the attitudes of employers, or even the experience of impairment or illness  - but the motivation and attitudes of disabled people themselves. The most recent example of this is the removal of £1500 per year from people who have been assessed as currently not able to work because of illness and/or impairment, on the grounds that this would improve their motivation to “move closer to the labour market”.

At the same time, policies aimed at providing the assistance that people might need in order to get or retain employment are failing - primarily because they are not based on disabled people’s actual experiences and needs. 

Two examples: The Work Programme - the government’s main programme for helping people to get a job - is only managing to assist about 1 in 9 people on ESA into employment.  The Programme generally has a poor record in enabling sustained employment with only 1 in 4 remaining in employment for 6 months or more.

But it’s not just that the Work Programme isn’t achieving its aims.  It’s also actually harming people.  A survey carried out for Mind found that the majority of disabled people who were put on the Work Programme felt that the experience had worsened their mental health and had made them less likely to gain employment. Almost 20,000 people with mental health difficulties had their benefits stopped as a result of sanctions during 2014/15, an increase of 668% over the last four years. And sanctions mean no money for food, heating, rent.

At the same time, Access to Work funding - intended to pay for the support, equipment or adaptations that people might need in order to work - has been restricted for each individual and this is threatening, amongst others, people who need Sign Language Interpreters. Jenny Sealey, for example, fears that she will no longer be able to work full-time as a theatre Director. There is  also anecdotal evidence that, in general, when people are reassessed their funding is being reduced, although the DWP has refused a Freedom of Information request which would confirm whether this is a common experience.  Although there have been increases in last couple of years to the Access to Work budget, earlier cuts have not been made up and it is still not funding as many people as it was in 2010.

The message that disabled people are getting is summed up by Jenny Sealey when she says:  “I am very curious to know why Deaf and disabled people are considered second-class citizens, why we are ghettoised, discriminated against and deemed worthless”.

These two examples illustrate two key aspects of current government policies: a punitive approach to what we used to call social security but has now been renamed ‘welfare’, which bears very little relationship to people’s actual experiences or needs; and an over-riding aim of cutting public expenditure. The message is that the key to being accepted as a full citizen is to be in paid work; but that there is a limit to which we the government, on behalf of all citizens, is prepared to pay to enable you to enter and retain paid employment.   And what’s more, we think the main barrier is your attitude to work so we will reduce your benefits in order to ‘incentivise’ you to try harder. No wonder many disabled people caught up in the benefit system feel very very insecure. 

The second policy area concerns independent living - two words which sum up what it is to have self-determination, and to have the opportunities to participate and contribute.  But access to independent living has been undermined by cuts to social care budgets.  Although independent living is not just about social care, it is no accident that a protestor at Norfolk County Council’s recent meeting where further cuts of £50m were made to social care, held up a placard saying “No to 2nd Class Citizenship for Disabled People”.

Increasingly people who need support to go about their daily lives are finding that the maximum support available confines them within the four walls of their own home.  Fifteen minute visits three times a day is, for many older disabled people in particular, the maximum help they can expect from their local authority.  Deaths amongst older people have been rising since 2011, having previously fallen since the 1970s, and it is claimed that this is a result of the ‘crisis in social care’. 

The Care Act and the accompanying statutory guidance is full of fine words but the promotion of so-called ‘well-being’ is incompatible with the level of cuts sustained by social care and the proposed 2% increase in council tax is not sufficient to make good the total level of funding cuts since 2010.  The same Norfolk County Council meeting which cut the social care budget also raised its council tax by not 2% but 4% (primarily because they needed to in order to continue to provide statutory children’s services). 

The closure of the Independent Living Fund was a major setback.  It is not just that many people transferring from ILF funding are reporting reductions in the amount of support they receive, and restrictions on how they can use their direct payments, but that there are thousands of people who, since the Fund closed to new applicants in 2010, have never had the opportunities that the ILF had been delivering to people with the highest support needs since 1988.

The largest group of people who received funding from the ILF were people with “severe learning disabilities”.  Will they be more likely in the future to enter institutional provision, for example the new hospital in Northampton on the site of the old Northampton Lunatic Asylum which boasts of being the ‘Europe’s largest mental health facility for young people learning disabilities and/or autism’?

Whatever the government’s intentions set out in its various responses to scandals such as Winterbourne View, American companies have identified lucrative opportunities for moving into the provision of in-patient mental health services, particularly those specialising in secure accommodation for people with learning disabilities and/or autism. Journalists writing about these developments put them down to a ‘rise in NHS outsourcing’.

In 2013, Guardian journalist, Zoe Williams, posed a question to the government we would all like an answer to: “What's your plan for these people whose lives we apparently can't afford?”  She was specifically referring to those affected by the closure of the ILF but there would seem to be an increasing number of disabled and older people who are getting the message that society in general is not willing to allocate sufficient resources to enable them to go about their daily lives in the way that non-disabled people might take for granted. 

I could carry on depressing us all by listing the many many other policies which are undermining disabled people’s self-determination, and failing to deliver full citizenship.  But there are common factors driving these policies and we can’t hope to counter them unless we address these fundamental issues. 

These factors are inter-related and there are many different facets of them but I think they can be divided into two: a belief that public goods and services are best delivered through competition between providers; and a failure to recognise the economic and social value of the common good.

The basic assumption behind the promotion of competition in public service is that accountability is to be achieved via market mechanisms. So, with the NHS, first a so-called ‘internal market’ was introduced in the early 1990s and then competition was opened up to private providers.  The theory is that competition will increase efficiency (by driving down costs) while commissioning for outcomes, together with regulation, will assure quality.  This is not so much privatisation of NHS providers (although there has been a steady increase in private companies gaining NHS contracts) as the marketisation of all healthcare, whether provided by public bodies or not.  

But if markets are supposed to deliver efficiency and quality, why do we get to a position where, to take only a couple of recent examples, our taxes were paying up to £4000 pw for a private company to keep people with learning disabilities - described as needing “extra help to live 'in the community’” - in inhumane conditions.   Or where we were paying an NHS organisation over £3000 pw to provide such negligent care that a young man with learning disabilities and epilepsy drowned in a bath?

Why haven’t those commissioning or regulating these services, on our behalf, prevented this kind of thing happening?  How, for example, can an NHS Trust be found so negligent that it is responsible for the deaths of people in its care, which fails to investigate more than a handful of ‘unexpected deaths’ and yet no-one is held accountable.  Marketisation of NHS services - whether they are outsourced to the private sector or not - has not delivered accountability to its service users. 

The provision of social care was, of course, privatised as a result of the community care reforms in the 1990s.  This was intended, like all privatisations, to deliver choice, quality and efficiency but as things currently stand none of these things have materialised.  Instead, we have a regulator struggling to impose acceptable standards while care homes and homecare agencies go out of business because local authorities won’t pay enough for their services.  The bottom line is that there isn’t enough money going into the social care system. The private insurance industry has not been able to identify sufficient profit making products to provide an alternative to public funding and governments have been increasingly unwilling to provide sufficient resources raised from general taxation to meet the demand for good quality care.

It isn’t just that market mechanisms have proved unable to deliver quality and efficiency, it’s also that we as a society have not valued health and social care enough to be prepared to spend sufficient of our collective resources.  Or rather, we haven’t elected governments who have recognised the full extent of how vital these services are to our common good and who then use our collective resources to make the necessary expenditure.

As philosopher Michael Sandel says: “Some of the good things in life are corrupted or degraded if turned into commodities, so to decide when to use markets, it’s not enough to think about efficiency; we have also to decide how to value the goods in question”. (See ‘What Money Can’t Buy: The moral limits of markets’)

The other policy area that I focussed on - welfare reform - illustrates this second underlying problem. Not only have we as a society failed to value the common good, but an individual’s social value is increasingly defined as being in paid employment. None of the roles that most people fulfil outside their working life are to count as the contribution part of being a citizen. Moreover, paid employment is identified as the over-riding policy aim with no recognition that, for increasing numbers of people, work is bad for their physical and mental health because it is insecure, badly paid, and the working conditions are poor.  Despite this, the recent Mental Health Taskforce strategy identified employment as a “health outcome” outcome. 

This linking of social value with being in paid employment has its logical conclusion with Times journalist’s Matthew Parris’ contention that older and disabled people are “an unproductive overhang” and his belief that in the future it will be seen as ‘selfish’ for older people to refuse to accept assistance to die once they need a certain level of health and social care.

To summarise, citizenship for disabled people is incompatible with the kind of society that we are becoming (or, arguably, have already become).  This is because:

• governments have refused to raise sufficient levels of collective resources to support the social rights necessary to our full citizenship
• public services have been undermined and devalued by subjecting them to marketisation and/or outsourcing/privatising
• attitudes have been promoted which value human beings only according to their productive value.

The result is that disabled people’s ability to contribute and participate is being fundamentally undermined, in particular because the support required to enable self-determination is inadequate and steadily declining.

I hate being so pessimistic so I’ve been trying hard to find ways to be more positive.  And there are a few things we need to hold on to.

While the policies and behaviours of government and organisations can make life very difficult for front-line workers, it is important to hold on to the fact that individual workers do have opportunities to make a real difference to people’s lives - and to help people to make decisions for themselves about their lives.  It’s relationships that matter: for example, recent research, like much previous research, found that people using mental health services saw their relationships with care co-ordinators as being central to their recovery.

Lucy Series, a researcher at Cardiff Law School, writes a blog called The Small Places, the title of which refers to something Eleanor Roosevelt said in 1958:

"Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world."

For all of us, it’s in the small places of our daily interaction with others that we have the opportunity to behave in ways which are kind, which recognise people’s full humanity and which can thereby help contribute - sometimes against heavy odds - to their value as citizens.

Another cause of optimism is the way the awful experiences of individuals have - primarily through social media - been brought out of the private sphere into the public.  In the early days of the disability movement we neglected the experiences of people with long-term health conditions. And although these are the people who arguably have been most affected by welfare reform policies in recent years, they are also the people who have led the campaigns against such policies.  People who cannot leave their house, who cannot engage in more traditional forms of campaigning have made their voices heard through social media.  In addition, those who in the past would have been using the traditional forms of getting their voices heard have also capitalised on the new opportunities for communicating a message.  One key example is the Justice for LB campaign - which included the first ever live tweeting of an inquest into the death of a young man with learning disabilities - and which has used other imaginative and evocative methods combining real world and virtual world methods.  

But all the time we have to recognise what are the fundamental causes of the problems we face.  A denial of the common good; an attack on the idea that we can pool resources to promote the common good; a removal of democratic accountability from government and local government and their replacement by the accountability of the market.  What we need is more democratic accountability not less.  What we need is a recognition that there are some things which we should value as a society and which cannot be efficiently or effectively delivered through financial incentives and self-interest. In particular, what we need is the involvement of people whose lives are affected by the way we use collective resources. If we think that increasing employment opportunities for disabled people is a good thing, then systems and services to achieve that must be designed by disabled people themselves. And if we want to use public money to enable people with learning disabilities, currently shut up in institutions, to lead ordinary lives then it is they, their advocates and their families who should to decide how to use that money. 

Until we address these fundamental causes disabled people will increasingly feel unsafe, as if we do not belong, and as if our government is not acting in our best interests. And, to answer the question posed by my title, self-determination and citizenship will indeed increasingly feel out of reach for disabled people.

Do we have to prove our 'usefulness' in order to be accorded human rights?

“It is one thing to guarantee someone the right to die without suffering or without the use of heroic or extraordinary measures.  It is another thing to require that certain individuals or groups be forcibly destroyed as lives useless to the community - lives not worth living.  The logic in each case is different: in the first, the goal is to provide individual happiness in the final moments of life;in the second, the goal is an economic one - to relieve society of the financial burden of caring for lives considered useless to the community.”

2016 didn’t get off to a good start for those of us who value human life in all its wonderful diversity - or for those approaching the last decades of our lives.  Quite apart from the awful things that humans beings are doing to other human beings in various parts of the world, there are two issues closer to home which make me wonder where we are heading.

We started 2016 no closer to action being taken to reduce the shocking and avoidable early mortality rate amongst people with learning disabilities. Revelations of one NHS Trust’s failure to investigate many ‘unexpected deaths’ has been met by resistance from the Trust concerned; and a response from NHS England, the Care Quality Commission and Monitor which has been criticised as inadequate by Sara Ryan and the #JusticeforLB campaign whose valuable work highlighting this the government has acknowledged. 

And then on January 1st, Matthew Parris, an influential Times columnist, was interviewed by Baroness Jane Campbell on the Today programme defending an article he had written, which was headed “Some day soon we’ll all accept that useless lives should be ended”.  In an audio clip on the same site he had referred to older and disabled people as “an unproductive overhang” and he returned to this argument in a Times opinion piece written on New Year’s day, arguing “that any ageing society will in time question how much those wanting help should demand of those who must pay for it” (the article is behind a paywall but can be viewed for free here).

Of course, people like Matthew Parris are many steps removed from those whose actions or inactions cause someone else’s early death: the carelessness which results in a young man with learning disabilities drowning in a bath; the lack of attention to an older person in hospital who cannot drink or feed themselves without assistance. But people who have the ear of the public and who use their position to influence opinion, help create such carelessness and lack of attention, the casual devaluing of the lives of others. 

This devaluing comes about when we psychologically distance ourselves from others who we see as ‘not like us’.  It is easy to see how this is happening when people (such as those working at Winterbourne View) behave inhumanely towards people with learning disabilities.  Yet when someone considers the life of a very old and frail person and says to themselves, ‘I would rather die early than be like that’, their seeming sense of identification is in fact false and they too are psychologically distancing themselves. Their judgement about the quality of life of someone else is based on their current experience and judgement, not on that person’s or their future self’s actual experience and judgement.

I know this from personal experience.  If someone had said to me the day before I had my accident 33 years ago that, from tomorrow, you will be permanently paralysed for the rest of your life, I would have replied I would rather be dead. And yet, such a thought never occurred to me once it had happened. This is why, although I hope that - should life really become unbearable in the future I would have control over whether I continue living - I will never make a decision on behalf of my future self.  My future self will have different experiences and judgements from my current self and I don’t think I can know what my decisions will be. 

This is also why the only moral basis on which to support ‘assisted dying’ has to have the decision of the individual at the heart of it.  And why any decision has to be uninfluenced by the kind of social attitudes that Matthew Parris says will and should be created amongst older people - the attitude that it would be ‘selfish’ to continue living.  

The Equality and Human Rights Commission has pointed out that a failure to investigate unexpected deaths “could be a breach of the right to life under the Human Rights Act”. This is a timely reminder that encouraging the premature ending of people’s lives is a breach of a fundamental human right which was passed into international law following the Second World War. The point about human rights is that we have them by virtue of the fact that we are human.  To deny such rights to a particular group is to deny us our humanity. 

And now I need to come clean about the source for the quote at the beginning of this blogpost - at the risk of falling foul of Godwin’s Law.  It comes from a detailed study of the role and practice of doctors involved in the ‘euthanasia’ programme instigated by the Third Reich.  This was the  ‘mercy killing’ of 70,000 older and/or disabled people between 1939 and 1941. The programme was then officially stopped as a result of public protest but continued unofficially until 1945 and probably killed more than 200,000. 

I have never before claimed that current attitudes and treatment of disabled people are reminiscent of what happened during the Second World War.  But when an opinion piece by an influential commentator invokes ‘usefulness’ as a qualification for receiving necessary health and social care services, when disabled people die early as a result of neglect and lack of medical treatment, I do think we are entering very dangerous times.  

While disabled and older people could argue convincingly of the contribution we make and have made to our families and friends, our community and to society generally we should resist making such an argument.  Our human rights are rooted in our common humanity and to attach conditions to such rights is to treat us as less than human.

Iain Duncan Smith has a point - but it's not the one he thinks....

Iain Duncan Smith is responsible for replacing child poverty reduction targets based on household income with targets relating to ‘worklessness’ and educational attainment.  The validity of these new targets is based on assumptions that the behaviour of individuals is the major factor determining life chances rather than the wider social and economic circumstances in which they find themselves.

So why do I think he has a point?  (Even if it’s not the one he thinks it is.)

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In 2010, the Child Poverty Act was passed with all Party support, one of the last achievements of Gordon Brown’s government.  It set targets for reducing child poverty through to 2020 and imposed a duty on governments to report every year on progress towards those targets. Four measures of income-related poverty were to be used (relative, combined low income and material deprivation, absolute, and persistent) and the Act also required local government to assess levels of child poverty in their areas and develop strategies to address these.

In 2015, the Conservative government is abolishing the duty to tackle income-related poverty and replacing it with a new duty for the Secretary of State to report annually on “life chances”.  These are to be measured by the proportion of children living in workless households and educational attainment at the age of 16. In addition, the duty on local authorities to develop strategies to address child poverty is abolished, the Social Mobility and Child Poverty Commission is to be renamed the Social Mobility Commission, and measurement of progress on child poverty is removed from its remit, which is now to be entirely concerned with social mobility.

These radical changes are a result of arguments made by Iain Duncan Smith, Secretary of State for Work and Pensions, and the think tank he founded, the Centre for Social Justice. They are made despite widespread criticism, not only from Labour but from almost all academics and voluntary sector organisations working in the field. 

The Social Mobility and Child Poverty Commission concluded “that the numbers of children in both absolute and relative poverty are set to increase significantly over the next few years, with the 2020 targets being missed by a considerable distance. Nothing in the [the government’s child poverty] strategy changes this finding”.  

This of course is the point. The Centre for Social Justice argued that: 

The law that binds us to this measure must now be scrapped before it does serious damage. The legal implications of not hitting the target – or rather of not working towards hitting the target in 2020 – are becoming serious. Legal advice given to the CSJ has suggested that if it looks like the government might not reduce relative income poverty to the requisite level by 2020, judicial review could lead to the courts requiring the government to take steps to do so.

The CSJ and Iain Duncan Smith partly justify their approach with practical arguments about the appropriateness of using 60% of median income to measure poverty - a household may move out of poverty not because their income has increased but because the median level of income has fallen (as happened during the last recession); and it encourages policies which aim to get people just under the median income to move to just above -  the ‘poverty plus a pound’ argument.

However, their more fundamental argument is that poverty is caused by factors such as worklessness, family breakdown, educational failure, addiction and serious personal debt and that these are more appropriate measures of children’s life chances.

This argument is driven more by ideology than by evidence.  The immediately obvious point is that being in work is no protection against a poverty-level income - indeed there are now more children living in poverty in working families than there are children in families where no-one works; and the evidence is that most low paid workers stay on low pay and do not progress onto higher incomes.

A more fundamental problem with the new child poverty targets is that they are predicated on an assumption that it is the source of parents’ income which is more important than how much income they have.  As Iain Duncan Smith argues:

Increase their benefit income – while taking no other proactive action – and you push the family further into dependency, only increasing the chance that their child will follow that same path as an adult. So while income is important we should be clear that the source of that income can have very different effects. Income through benefits maintains people on a low income, whereas income gained through work can transform lives.

So the government ignores the fact that increasing numbers of working parents are earning poverty-level wages and proposes that ‘worklessness’ is an appropriate measure of whether children are adequately housed, clothed, fed.  They also ignore evidence that changes to the social security system since 2010 create conditions which are harmful to children’s life chances.  As a result of lower incomes, many parents struggle to provide the basics of a roof over their head, warmth and food - 7.7 million children live in families adversely affected by the below inflation uprating of child tax credits and child benefits, and one in five of these families have cut back on food and/or cut back on heating because of this.  

In his emphasis on ‘individual responsibility’ and ‘worklessness’, Iain Duncan Smith also ignores the fact that a systematic review of evidence found that money does in itself make a difference to children’s outcomes.

So money does matter to children’s life chances and therefore should be included in any measurement of child poverty.  But so too do other factors - and this is why Iain Duncan Smith and the CSJ have a point.  

Children’s life chances can be improved or damaged, not only by the level of household income, but also by whether they have access to services such as health, education and housing, and to other types of support in their daily lives. 

What Iain Duncan Smith ignores is that, crucially, these are factors which can be improved or diminished by government policies.  This is despite his own admission that these types of services both improve outcomes for children, and should be part of the measurement of child poverty targets.  As he himself said, Health Visitors, for example: 

have been found to play an incredibly important role in helping families to cope and provide a stable environment for young children. Yet, once again, we don’t do enough to assess the impact of this investment on a family’s life in the long run. So I believe that we must look more closely at how we are measuring the impact of these interventions, and continue to push a debate about these wider measures of poverty.

When I was working with the Office for Disability Issues during the period of the last Labour government, we had a discussion with Treasury officials which started with a consideration of whether it would be useful to include access to public services such as a Sure Start Centre, in the measurement of child poverty and life chances.  This discussion didn’t go very far which is unfortunate because it might have opened up the possibility of recognising that universal access to good quality public services is a key part of tackling unequal access to life chances.

The irony - and tragedy - is that, although Iain Duncan Smith and the Centre for Social Justice have a point in their argument that poverty is not entirely about money, this government is creating a society where access to a good outcomes for children is becoming more and more about how much money their parents have.  

Who gets access to housing which enhances the quality of their family’s life?  People who are already economically advantaged (either by virtue of their own earning power or the wealth of their parents).  Who gets forced into housing which damages their and their children’s health and well-being? Families unable to afford decent housing because of the benefit cap and other reductions to their benefits, sanctions imposed by the Job Centre, unemployment caused by ill health and impairment or by wider economic forces beyond their control, the failure of successive governments to control rents and build social housing, and so on. 

Who gets access to good education? Children whose parents can afford to live in or move to an area with good state schools, where parents have enough social capital to start a ‘free school’, or where they can pay for private tuition or private school. Who gets access to good child care?  Parents who can afford to pay for it.

And why is this happening?  Because government policy generally supports markets as the main distribution mechanism for goods and services, whether this is through reducing ‘the size of the state’, encouraging the encroachment of the private sector into public services, or creating pseudo-markets in not-for-profit sectors.  Even when the government attempts to target resources to enable children from poorer families to get better access to public services, their overarching aim of reducing public expenditure can undermine the intended outcomes. This is what is happening with the Pupil Premium for example.  The National Audit Office reports that per pupil funding in the most disadvantaged secondary schools fell between 2010 and 2015, despite the pupil premium, because of other real-term reduction in other types of funding for schools.  

A refusal to recognise the harm to children caused by social and economic disadvantage means that the government and its actions/inactions are let off the hook.  Government policies can harm or enhance people’s lives. George Osborne can talk about a ‘high wage low welfare’ economy but in reality current policies are creating a ‘low wage low welfare’ economy with diminished public services and increasing inequality.   

The result is that children’s lives are being sacrificed to a political party’s aim to reduce public expenditure and collective responsibility, on the grounds that this will create the space for private enterprise and private profit, thereby supposedly fuelling economic growth. While there is no evidence that a ‘smaller state’ creates economic growth, there is plenty of evidence that both low household income and lack of access to good quality housing, healthcare, education and support services damage children’s lives. 

The new child poverty measures are therefore wrong on two counts - not only do they not include income but they also fail to measure access to the public services which, together with income, determine children’s life chances.

'We' and 'People like you": collective responsibility and the common good

I didn’t watch last night’s BBC Question Time (it’s a programme that’s bad for my blood pressure) but Twitter is awash this morning (27th November) with an exchange between an audience member and Matthew Hancock, a Conservative Minister.  

Having described the impact of cuts on her son (who has learning disabilities), she received the following response from Matthew Hancock:

Hold on, if we don't have a country that can live within its means then we can't fund those sorts of public services that people like you rely on.

There’s a revealing use of the words ‘we’ and ‘you’ in this response.  The phrases ‘we can’t fund’ and ‘people like you’ separate the population into two distinct groups - those who pay for and those who use public services. 

The point about public services is that they are (should be) services universally available to those that need them, made possible through the principle of collective responsibility and a progressive taxation system.  Matthew Hancock and his family may have no need at present for the type of services that the audience member was describing, but if that need should arise then the service would be (should be) available to him.

But the phrase ‘if we don’t have a country that can live within its means’ signifies a position adopted by those who have decision-making powers - justified by meaningless rhetoric and which has no room for the notion of the common good. Those who relegate public services for groups like people with learning disabilities to a low political priority do not see themselves as potential beneficiaries of a service, collectively funded, for those who need it.  If they think about it at all, they are likely to assume that they will be able to pay for the support they or their family might need - the idea of a common good is of no relevance to them (unless it’s an NHS emergency service of course, because that’s a service that is not, currently, provided by the private sector).

A separation of ‘we’ from ‘you’ inevitably follows. Those who need specific types of support are separated out from the mainstream by the language used about them, with Ministers (falsely) claiming to be ‘protecting’ the ‘most vulnerable’.  The ‘you’ who are not part of ‘we’.  

Five years ago, the word ‘austerity’ was used to justify a need to cut back on public expenditure because of the fall out from the banking crisis. The common good was sacrificed to the ‘need’ to bail out the banks.  Five years followed of undermining the social security system, the education, health and social care systems on which the majority of us rely at some point in our lives.  We are now in a new phase of an all-out assault on collective responsibility for the common good - now a political aim in its own right. This is illustrated, as I pointed out in a previous blogpost (here), by the decision to reduce the sickness benefit payable to disabled and ill people.  This is part of a long-term aim to replace collectively funded sickness benefit with privately funded insurance.  

Social care has never been properly funded through a progressive taxation system. Previous governments hoped, in vain, that ‘the market’ would develop insurance products to cover the cost of long-term care.  At the same time, the delivery of services have been increasingly privatised over the last 30 years and public funding to pay for these services has fallen further and further behind increasing demand.   Private providers are rapidly reaching the stage where they can only make a profit out of the most well-off self-funders and the insurance industry shows no signs of developing a financially sustainable product which would provide an alternative to public funding - not even to cover the reduced responsibility that individuals would have if ever this government introduces the proposed lifetime cap on care costs.  

The privatisation of sickness benefit is likely to lead to a similar situation as that in social care where there is increasingly unequal and inadequate provision to meet needs which no-one can predict but which can have a disastrous impact on people’s lives.  

This situation will only change if we as a society are prepared to step in to meet such needs on the grounds that it is in all our interests to do so.  But this current government, and the interests it represents, cannot see this because they, as Matthew Hancock so graphically illustrated, separate the ‘we’ of themselves from ‘people like you’, namely ‘us’. 

Independent living and disabled people: Rhetoric and reality

As in most areas of current British policy, there is a yawning gap between government rhetoric and the actual impact of policies on disabled people’s lives.  The government’s website provides a link to the United Nations Convention on the Rights of Persons with Disabilities but there is mounting evidence that its policies are taking us further and further away from the realisation of these rights. The most recent summary of this evidence is provided by Inclusion London’s excellent account published recently, which I would urge everyone to read. 

The gap between rhetoric and reality is perhaps most apparent in respect of Article 19.  All governments which have signed up to the Convention (as the British government has) commits them to: 

recognise the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community.

Our government is very keen to point out that disabled people in this country are better able to access this right to independent living than in many other parts of the world.  This is undoubtedly true but what it fails to acknowledge is that this progress was made as a result of government policies during the 20 years up to 2010.  Since then, our access to independent living, has been steadily undermined - and it is of no comfort to tell us that we are better off than if we were living in, say, Romania or Zimbabwe. 

Current rhetoric makes much of the Care Act 2014 and the roll out of personal budgets.  Personal budgets have their origins in the success of direct payments - cash payments in lieu of social care services which enabled disabled people to have choice and control over how their support needs were met.  It was recognised that not everyone wanted to take on the tasks and responsibilities of purchasing their own support so personal budgets were intended to give people control over the resources to which they were deemed to be entitled.  Their purpose was to deliver the same degree of choice and control as direct payments, but with social services authorities taking responsibility for managing the money. 

I’ve written before about the importance of recognising this original vision of personal budgets and how they were driven by the wish to deliver self-determination, the bed-rock of independent living. 

The idea that the current implementation of the Care Act is delivering self-determination is significantly undermined by the reality - and we should remember that April 2015 (when the Act was formally implemented) was not Year Zero.  The legislation was only a culmination of what local authorities were supposed to have been doing since the various attempts to 'transform' and 'personalise' social care since the 2007 Putting People First strategy. 

So what is the reality?

The most recent snapshot is given by a survey, initiated by the Independent Living Strategy Group, of people’s experiences of social care over the last year.  This found that almost half (45%) of respondents said that their quality of life had reduced and almost a third (30%) said that they had experienced a reduction of choice and control over the past year. This follows the government’s own evidence that - while there was a slight improvement in disabled people’s experience of choice and control between 2008 (the first year this data was gathered) and 2011 - from 2011 onwards progress was halted.  In 2008, one in five did not ‘frequently’ have choice and control.  By 2013 this had increased to one in three. (And the longitudinal survey which gathered this data has been discontinued)

But why would we expect anything different?  Funding for social care support has been declining since 2010, while demand has been increasing. This has resulted in: a reduction in the numbers receiving social care support; reductions in the amount of support people get; and a financial crisis amongst care providers as a result local authorities’ commissioning practices.

I can guarantee that the government will trumpet the increase in the numbers of people receiving what they call ‘self-directed support’. But this is just another example of the gap between rhetoric and reality. What this means is that more people in receipt of social care now receive personal budgets (about two thirds of total recipients). But the reality is that, far from delivering self-determination many local authorities are implementing personal budgets in ways which do not deliver choice and control.  Budgets are set at levels which do not allow for more than basic personal care and restrictions are placed on how money can be used. Instead of auditing whether budgets achieve outcomes, they are measured by requiring the purchase of specific units of time and type of service.  And very onerous and time-consuming record-keeping is often required which undermines flexibility and self-determination.  

In addition, independent living is getting more difficult to access for people who would have had their support needs met by the Independent Living Fund before it closed to new applicants in 2010. And those in receipt of ILF funding until its abolition this year are fearful of the consequences of transferring to local authority funding.

The Association of Directors of Social Services and the Local Government Association told the government that “the value of the personal budget ….will generally be at a lower level than the initial ILF/LA [Independent Living Fund/Local Authority] budget”. The Coalition government accepted that this will be the case when it published an Equality Analysis on closure of the Independent Living Fund. 

As local authorities carry out reassessments of people transferring from the ILF there is emerging evidence that significant numbers will receive lower levels of support.  A Freedom of Information request to one local authority has revealed that of the 60 who have been assessed, 53 have had their packages reduced.  Of these, 16 have seen cuts of more than 50 per cent; seven of between 41 and 50 per cent; and 11 of between 21 and 40 per cent. 

Disabled people in receipt of Independent Living Fund grants have voiced their fears that they may be forced into residential care.  That this may well not be an unfounded fear is confirmed by the National Association of Financial Assessment Officers (the people who carry out the means-test to determine whether disabled and older people should be charged for their care) who told the government “some councils may determine that residential care would be a less expensive option than a high cost home care package”. And there is recent evidence that Clinical Commissioning Groups, responsible for funding people whose care needs are deemed to require nursing care, are limiting the amount of support at home to the cost of a nursing home placement.  It is already the case that 1 in 5 young people with spinal cord injury are discharged from hospital to nursing homes for older people, partly because of lack of available housing, but it will only become harder for them to return home if funding from both local authorities and CCGs is squeezed further. 

People with learning disabilities are particularly disadvantaged by the closure of the Independent Living Fund. People with ‘severe learning disabilities’ make up the largest single group (33%) whose support needs were funded by the ILF and the government has recognised they are likely to experience a reduction in their support package when transferred to local authority funding. 

The Independent Living Strategy Group is an informal group of organisations and individuals who are seriously worried that independent living opportunities are rapidly diminishing. The Coalition government, although it signed up to the 2008 Independent Living Strategy, disbanded the Independent Living Scrutiny Group chaired by Jane Campbell, and failed to examine progress at the end of the 5 year Strategy.  In 2014, the ILS Group attempted to do this instead - albeit hampered by the discontinuation of, and failure to measure, the necessary data. 

We have now embarked on a monitoring of disabled people’s experiences of the Care Act, including a monitoring of what happens to people who transfer from the Independent Living Fund.  The recent survey is just the first stage.  Subsequent stages will try to measure the current government’s rhetoric against the reality of people’s actual experiences of receiving support. We fear that the gap - already wide - will just increase and that, far from making progress on delivering Article 19 rights to independent living, disabled people’s opportunities will in fact diminish. 

Please don't talk about the "most vulnerable".

Since 2010,  most political debates about disabled people have used the term “vulnerable” - or more often “most vulnerable” - to argue for or against current government policies on social security and social care. 

David Cameron and Iain Duncan Smith are particularly keen on this term.  As Cameron said in June this year:

Whatever the pressures, we will stand by my promises to protect the most vulnerable – including the most disabled who cannot work because that’s the sign of the compassionate country I believe in.

But it isn’t just Conservative politicians who have described disabled people in terms of their ‘vulnerability’.  Labour politicians have done it as well.  To take just one example, most Labour MPs speaking in a debate initiated by Labour’s Rachel Reeves in 2013 referred to ‘the vulnerable’ or ‘most vulnerable’ to argue the case against reforms to housing benefit.

The etymological origins of the word ‘vulnerable’ are to be found in the Latin word for wound.  Thesaurus offers alternatives such as: defenceless; open to attack; frail; exposed; unprotected; impressionable.  Cameron’s use of the word in his speech to the 2012 Conservative Party conference confirmed these meanings when he argued that:

Conservative methods are not just good for the strong and the successful but the best way to help the poor, and the weak, and the vulnerable.

Up until a few years ago, disabled people had been on a long journey away from this curtailment of our lives and ambitions,  a journey away from being defined as objects of pity and charitable endeavour to ‘look after’ and ‘protect’ us.  

Allan Sutherland, a disability activist writing in 1981, said;

We are not weak; we are not powerless; we are not alone.  Control of our future is ours for the taking.   

Such a vision - and the struggle for our human and civil rights which followed - is incompatible with the notion of ‘vulnerability’ as applied in current policy debates. 

Unfortunately, as the full implications of the ‘welfare reform’ agenda became apparent following the 2010 election, some disability activists and organisations started to also use 'vulnerability’ in their attempts to point out the injustice of the policies. 

By using the terms ‘vulnerable’ and ‘most vulnerable’, we are voluntarily taking ourselves back to those days when to be disabled was to be shut out, shut away from society, the object of pity, not part of mainstream society.  The words are as far removed from defining disability as a civil rights issue as it is possible to be.  

Not only that, if we use the term ‘vulnerable’ to make our case for a good quality life, we collude with the centuries-old categorisation of the ‘deserving’ and ‘undeserving’. 

These categorisations have little to do with people’s actual material circumstances but are based instead on supposed personality and psychological characteristics. 

This goes back to the days of the Poor Law, when Poor Law Guardians - custodians of the funds raised from ratepayers - attempted to distinguish ‘sham cripples’ . Like then, distrust and blame are still the most common values underpinning welfare reform,  People with impairments or illness which have no significant physical outward signs fare particularly badly within such a value system. Distrust and blame make it hard to get recognition for the functional limitations which accompany mental health difficulties such as social anxiety, post-traumatic stress disorder, or clinical depression.  Distrust and blame lead to a refusal to acknowledge the realities of people whose impairments or illness fluctuate. Distrust and blame even lead to people with terminal conditions being declared ‘fit to work’.

These days, instead of ‘sham cripple’ we have ‘shirkers’ and ‘scroungers’ and it is the word ‘vulnerable’ - or rather the term ‘most vulnerable’ - which is used in order to distinguish the ‘deserving’ and ‘undeserving’.  If you are categorised as ‘most vulnerable’ your impairment or illness is accepted as ‘real’ and, most importantly, not your own fault.  

The key thing about being vulnerable is that you lack agency, you depend on others to protect you.  In a world where politicians talk approvingly of ‘aspirations’ and ‘hard working families’, disabled and sick people are placed in a double bind.  The legitimacy of need for support is dependent on being ‘most vulnerable’ and, in order to get the support you need, you therefore have to place yourself in a situation where you are beyond aspiration and autonomy. 

As Caroline Richardson, writing for the Spartacus Network, says: 

In the current political climate, being 'vulnerable' casts you as worthy but also demeans you, portraying you as passive, helpless and in need of benevolence. This appears to contradict the promotion of aspiration, and paints a very confusing picture. To function within this framework necessitates proving your own vulnerability to secure ever smaller crumbs of welfare, simultaneously almost writing yourself off from any dream or aspiration. This artificially created juxtaposition is profoundly demoralising. 

As many people have pointed out, it is government policies that make disabled people vulnerable - vulnerable to being poor, to insecure and inappropriate housing, to mounting debt, to being imprisoned within our own homes because of lack of support. What is more, as Neil Crowther argues, the language of vulnerability actually makes disabled people less safe.  Moreover: 

It promotes the idea that society’s primary responsibility should be to act as custodians, not to respect and promote disabled people’s freedoms.

So my plea to disability activists and our political allies alike is - please never ever use the words ‘vulnerable’ or ‘most vulnerable’ when making the case for our equal access to a good quality life.  By all means, point out that current government policy and some wider social attitudes make us vulnerable to poverty, homelessness,  unemployment, abuse and discrimination.  By all means, point out that cuts to social care make us vulnerable to being consigned to residential care or imprisoned within our own homes with minimal support.  By all means, point out that welfare reform is leaving households without enough food to eat, at risk of eviction, and frightened.

But such vulnerability is created by political choices and prejudice. We should be campaigning to remove the policies and practices which create vulnerability, not using the term as a qualification for support. If disabled people are made vulnerable this is a human and civil rights issue.  It took us many years to reframe our position in society away from that of a matter of protection and exclusion.  Please don’t collude in imposing that history back onto us.

The end game of welfare reform

Over the next few months the Welfare Bill will wend its way through Parliament.  The reduction of benefit paid to people in the Employment and Support Allowance Work Related Activity Group (who have been found unfit for work but who may be able to return to employment at some point in the future) is just the latest in a long line of efforts by government to reduce the numbers on long-term out-of-work sickness payments.

In the early 1990s, pundits and politicians bemoaned the increase in the numbers of people claiming Invalidity Benefit (the forerunner of today’s Employment and Support Allowance), claiming that this had to be due to dubious claims.  Prime Minister John Major stated in 1993: “Frankly, it beggars belief that so many more people have suddenly become invalids, especially at a time when the health of the population has improved. I make no apologies for looking at this area of expenditure.” 

It was argued that the bill for Invalidity Benefit had increased because some people were placed on the benefit who were actually capable of working, and that there had been a growing ‘dependency culture’ because the level of the benefit acted as a disincentive to find work.  There was much emphasis in public debate on how many people on Invalidity Benefit were really the ‘hidden unemployed’ rather than too sick or disabled to work.

Invalidity Benefit was therefore replaced by Incapacity Benefit and an ‘All Work Test’ introduced.  In Parliamentary debates, emphasis was placed the need for more ‘objective’ assessments of fitness to work.  However, the new assessment did not in fact reduce the numbers claiming long-term sickness benefits, so the All Work Test was replaced with first, the Personal Capacity Test in 2000 and then the Work Capability Assessment in 2008 (when Incapacity Benefit was replaced by Employment and Support Allowance). 

None of these changes have led to a reduction in the numbers of people receiving long-term sickness benefits. 

Conservative, Labour and Coalition governments have consistently ignored evidence that the most important factors preventing people with long-term health problems from getting and keeping employment are: employers’ attitudes and practices; difficult and inappropriate working environments and conditions; personal and family difficulties, which encompass not only the debilitating impact of ill health but also factors which often accompany it such as debt, housing problems, caring responsibilities and so on.

For example, in 1993, the Policy Studies Institute -  commissioned by the Conservative government to carry out research on the reasons for the increase in numbers on long-term sickness benefits - concluded:

The explanation for the increasing cost of IVB lies in the economy as a whole, and in the hiring and firing practices of employers, rather than in a change in the behaviour of individual claimants or their doctors. The increase has not been caused by excessive ease of entry to the system, but by difficulty of exit. What is perceived as a problem for the government (increased costs) may actually be a problem for the claimants (inability to find appropriate work). 

 (Richard Berthoud, 1993. Invalidity benefit Where will the savings come from?, Policy Studies Institute Research Briefing, pp5-6.)

In terms of the chances of keeping your job if you become ill or disabled, again there is research which indicates that it is the ‘hiring and firing practices of employers’ rather than the ‘behaviour of individual claimants or their doctors’ which are more important. Longitudinal analysis published in 2003, this time commissioned by the Labour government, found that people who became sick or disabled while in employment were more likely to lose their jobs if they lacked employment protection, lived in an area with high unemployment, were older or had mental health problems.

However, there is a wider agenda at work in the drivers of welfare reform, namely the desire to promote the delivery of income protection provision via profit-making companies operating in free markets. Few of the narratives of opposition to the attacks on welfare reform focus on this ideological commitment to ‘the market’ but insurance companies and right-wing think tanks have been attempting to influence governments in this direction for over 20 years. 

One document which articulates this quite clearly is a report published by the Adam Smith Institute in 1995. Titled The Fortune Account, this sets out proposals to replace ‘state welfare’ with an insurance system “operated by financial institutions within the private sector”.

Wholesale privatisation of out of work sickness benefits found very little political support at the time but this did not stop insurance companies influencing changes to the welfare state which they perceived to be in their interests. One insurance company in particular had a direct input into both the 1990s Conservative reforms and those of New Labour.  Unum - a large US based insurance company - helped to develop both the Tory government’s All Work Test and its successors introduced by Labour.  As the All Work Test was rolled out, Unum was quite explicit that it hoped to gain customers as a result, with the Chairman writing: 

The impending changes to the State ill-health benefits system will create unique sales opportunities across the entire disability market and we will be launching a concerted effort to harness the potential in these.

And in 1995 the company placed an advert for its own income protection insurance:

April 13, unlucky for some. Because tomorrow the new rules on state incapacity benefit announced in the 1993 autumn budget come into effect. Which means that if you fall ill and have to rely on state incapacity benefit, you could be in serious trouble.

[These quotes come from the Paul Foot Private Eye article reproduced here]

UnumProvident, as it became following a merger, had a major influence on the Work Capability Assessment (as Jonathon Rutherford explains in his 2007 Soundings article, 'New Labour, the Market State and the End of Welfare).  The company introduced the Labour government to changes it had made to its own methods of assessment following increasing claims as a result of mental ill health and long-term conditions such as ME. Based on the bio-psychosocial model of ill health and disability, the WCA assumes that behavioural attitudes are key to ‘recovery’ and getting back to work, and that conditions and sanctions attached to receipt of benefit will bring about the necessary behavioural change. 

The motivation for ‘welfare reform’ in 1993 was to reduce public expenditure and decrease the size and role of the state.  And this has remained the desire of Labour, Coalition and Tory governments. 

In 1995 Adam Smith report which advocated Fortune Accounts pointed out that

Any new system has to be one which is within the domain of the politically feasible. It has to be one which governments would think acceptable to their electorates.

Over the last 20 years, the ‘scrounger’ rhetoric applied to people who are too ill to work, or who cannot get work because they are directly/indirectly discriminated against by employers, has been steadily increasing. After years of ramping up hostility towards people on long-term sickness benefits, the recent announcement of reducing payments to people in the Work Related Activity Group of ESA was swiftly followed by Downing Street briefing that the government was supportive of the idea of “making workers pay into flexible saving accounts to fund their own sick pay or unemployment benefits”.  It would seem that the Conservative Party believes it may now have reached a point where it can move to end the provision of income protection funded by taxation and available to all (which will undoubtedly please the insurance companies who have been major donors to Cameron since he took over as leader of the Conservatives in 2005).

The 1995 Adam Smith report stated: 

Some party, some government, will have to replace the welfare state by a less destructive alternative. The Fortune Account is the shape of its replacement.

Those who have been trying for years to influence governments to replace collective provision with private insurance may now feel they are moving into the endgame.