Wednesday, 30 September 2015

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.

Thursday, 13 August 2015

The end game of welfare reform

Three more extracts from material I found difficult to throw out while sorting out my study (for previous examples see here, and here):

“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.”

“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.”

“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.”

Now read on to find out where these quotes come from….
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. 

Wednesday, 15 July 2015

Reclaiming Our Futures

Yesterday, 14th July 2015, I spoke at the Reclaiming Our Futures Alliance conference in Sheffield.  The number of people there, and the level of debate and contributions, were a tribute to the growing strength of the disability movement.  Here’s the text for the speech I gave at the beginning of the day (what I actually said was a bit shorter than written here).

I’m not going to spend time recapping how awful things are and the impact of recent and forthcoming policies on disabled people.  Instead I want to identify some positives, sketch out a few priorities for the disability movement, and at the same time try and identify areas where we might make progress.

So what are the good things we can identify in the political situation that faces us?

Firstly, there is growing and energetic grass roots movement of disabled people which in many ways is bigger and has more potential than the earlier years of the disability movement.  Social media is a key factor in this - a tool which we didn’t have in the 1980s and 1990s.  This makes communication faster and more far-reaching than we could have dreamt of in those earlier days.  It also means that our movement is more inclusive: people who find it difficult to attend meetings or marches, or to be involved in other forms of formal organising, have made some of the most important contributions to recent activism.  The Spartacus Network's reports and Catherine Hale’s research on ‘back to work’ programmes and people in the Work Related Activity Group are good examples. And it means that experiences which are by their nature socially isolating are making their voices heard in the public sphere.

Secondly, the impact of government policy on disabled people is much more of a mainstream political issue than it ever was.  This is partly because of the disproportionate effect of austerity policies on disabled people but it is also because disability activists have been so prominent in the public debate. The fact that DPAC’s banner was at the front of the Anti-austerity March on June 20th illustrates that disabled people are at the head of the fight against the current government, rather than being on the periphery which is where we have usually been.

Thirdly, social care policy is moving up the political agenda - primarily because of the mounting crisis caused by local government cuts already made and the far worse ones which are about to come.  Local authorities (even the Tory ones) are potentially on a collision course with central government, particularly because there are increasing signs of a collapse in the market of private care providers (who can no longer make the kind of profits their shareholders require because of the cuts in local authority social care budgets).  Disabled people have won important fights before by making alliances with local government.  There is potential for doing this again.

And fourthly, the real world is at odds with the political rhetoric - one key example being the failure to reduce the numbers of people receiving out of work disability and sickness benefits. Over the last 30 years or so governments have brought in new assessment systems, accompanied by a range of threats and promises about stopping people ‘languishing on benefits’ but each time they have failed to significantly reduce the numbers - although in the process of trying they have ruined many people’s lives. All the evidence is that it is the behaviour of employers and what is happening in the wider economy which increases employment rates amongst disabled people - only when employers adapt working conditions, and support people to keep their jobs when they have periods of illness, will we increase employment opportunities. The gap between rhetoric and reality is also created, firstly by an ageing population - people in their 50s are more likely to be unable to work because of ill health - and secondly because the way our economy is run is increasingly bad for people’s health. 

In terms of our priorities and where we might make progress, I think the most important thing is first to be clear on what our principles are and to hold fast to these. 

In particular, we must not get drawn into using language which is diametrically opposed to disability rights and independent living. For example, we have to resist the term ‘vulnerable’.  It’s too easy to use this word in making the case against the devastating impact of cuts in benefits and services.  But this kind of language undermines us. It’s part of an agenda which is about separating out the ‘vulnerable’ from the ‘shirkers’, the deserving from the undeserving.  Let’s be clear, this rhetoric is a direct consequence of the government’s aim (which was also the aim of the last Labour government) of reducing the amount of money spent on both out of work disability benefits and additional costs benefits like DLA. 

It’s a term which is part and parcel of the current government’s aim of a ‘small state’ because it implies that there is this small group of people who are so ill or disabled that they require ‘special’ treatment but everyone else must sink or swim according to their own efforts. 

Our resistance to current policies should instead be based on arguments about social justice, about equality, about disabled people aspiring to the same human and civil rights as anyone else.  Resistance should not be based on separating out people with the most significant impairments or long-term health conditions and making them into a ‘special case’, to be ‘protected’ by a very basic safety net. 

Our resistance should be based on recognition that currently we have the kind of economy which creates low paid, insecure jobs that are bad for people’s health. An economy which creates working conditions that demand a level of fitness and resilience that many, many people do not have.  These are mainstream issues in that they are issues which affect a much much wider group of people than those who are identified as ‘disabled’. 

Our priority should be to make alliances with those more generally affected by our dysfunctional, unhealthy economy.  We should therefore be broadening out disability as an issue rather than making a special case of our so-called ‘vulnerability’.

Really good work has been done by disability activists and others to expose not only the flaws in the Work Capability Assessment but also the inability of private sector organisations to deliver what they promise when they tender for outsourced services.  And no doubt there will continue to be such opportunities.  But it’s really important that this campaigning puts disability equality principles at its heart.  This means showing how the behaviour of employers, and the kinds of low paid, insecure jobs on which our economy relies, create impossible barriers to employment for many people.  It means focussing on how the WCA is not even fit for its intended purpose, that sanctions are not only unfair but ineffective, and that so-called employment support programmes are not actually supporting people into employment.  

And it means focusing on the failure of current government policy to recognise illness as a barrier to work.  This last issue in particular has great potential in building broad alliances and exposing not just the callousness of government policy but also its impracticality.  This is a key policy area where we can also demonstrate that policies that work in the real world have to be developed in partnership with people whose lives are affected by them.

The Chancellor’s decision to remove those placed in the Work Related Activity Group from long-term benefit rates and only pay the same rate as Job Seekers Allowances opens up a real campaigning opportunity.  This change will not come in until April 2017, and only for new claimants.  This gives us time to expose the huge gap between rhetoric and reality - people in the WRA group are disabled, are ill, and are assessed as not currently capable of work.  There is considerable lack of understanding about this. Moreover, the Work Programme has proved unable to help more than a small percentage into work - which is not surprising given that it has been developed with no involvement from those with real expertise in what good employment support looks like - disabled people themselves. 

This relates to an opportunity which is not just of concern to disabled people but to the majority of the population: how to design and deliver services that are responsive to the wishes of individuals, that are accountable to their users (rather than to shareholders - as in the private sector - or to a professional group whose culture is one of ‘we know what’s best for you’ - as is far too often the case in the public and voluntary sector).  

The post-second world war welfare state may have been radical and empowering for its time but its bureaucratic and professionalised way of delivering services and support too often actually disempowered people.  Which is why we had to develop direct payments as a way of delivering self-determination for people who need support to go about their daily lives.  

Where policy and its implementation is not driven by those who use services you get situations where, for example, employment support services have very poor rates of actually helping people into sustained employment; where people with autism and/or learning disabilities are institutionalised for years in expensive services many miles from their family and friends; where disabled and older people are ‘warehoused’ at home or in residential settings.

As we know, social care is facing a crisis.  Crucially, this is affecting a much larger group of people than has been affected by cuts to disability benefits. We need to make alliances with older people and also family carers. There is scope in the context of the campaigning which needs to happen - and will happen - to push our concept of independent living. The original vision which drove the campaign for direct payments may have been subverted into a bureaucratic system of rationing ever-scarcer resources but that doesn’t mean we should abandon the aim of self-determination. It just means we have to be clearer than ever in our demand for control over the support we need to go about our daily lives.

The magnificent fight waged against the closure of the Independent Living Fund has brought into the public spotlight a question that needs to be continually asked of the government:  “Are you telling us that our society cannot afford to enable disabled people to have the kind of life, the kinds of opportunities, that non-disabled people take for granted?”.  One of our priorities should be to keep asking this question.  But we should also broaden it out because it is a question which applies to a much larger group than those who are commonly labelled as ‘disabled’, namely older people, including people with dementias.  The cut-backs in local authority budgets mean that increasing numbers of older people, who need support in their daily lives, are imprisoned within their own homes, receiving diminishing levels and quality of support, relying more and more on family, friends and neighbours for the most basic care. 

We need to build alliances with organisations representing older people and family carers.  And at the same time, seize the opportunity to influence their campaigns with our vision of independent living because this vision applies just as much to older people who need support in their daily lives as they do to the younger disabled people who developed them.  And as my generation, which came of age in the 1960s, enters old age I cannot imagine us being willing to put up with the ageism which is at the heart of many of the services on which we will come to rely.

The final point I want to make is that there is scope for both pissing inside the tent as well as outside of it.  Successful movements do both.  Trying to work with individuals and organisations who do not necessarily share our worldview is frustrating.  But it has to be done.  We made significant achievements in the past at both national and local government level, sometimes alongside voluntary sector organisations that we had profound disagreements with (even if we had to hold our noses).  We need to recognise that there are individuals working within these organisations (and at national and local government level) who we can truly count as our allies. We need to be able to support them: this means recognising the value of what might be called the “pragmatism of small step progress” while not losing touch with our fundamental critique.  

In the current political situation, where so much is against us, we do yet have a history of 30 years of disabled people’s struggle to build on.  And we have more and more people identifying with that struggle, and more effective ways of organising. The greatest opportunities are created by the ways in which it is now clear that our fight for social justice and a decent quality of life is also at the heart of a broader fight.  Remember less than 1 in 4 people voted for the manifesto that this government is currently implementing - and some of the things it is doing weren’t even in their manifesto anyway.  That is a significant democratic deficit. It opens up considerable opportunities for exposing the gap between rhetoric and reality, for voicing our vision of how to deliver human and civil rights for disabled people, and for building alliances with the increasing numbers of people affected by this government’s disastrous policies.

Friday, 19 June 2015

"This is starting to feel like a Monty Python sketch"

So here’s the second of my blogposts based on ‘stuff’ that I’ve found difficult to throw away while clearing out my study.  (The first one was about language and human rights).   What is also relevant to this blogpost is the lobby of Parliament planned for Wednesday 24th June 11a.m. in a last ditch attempt to persuade the government to change its mind about the closure of the Independent Living Fund (see for more details of this and the petition).
In 1991, I received funding from the Joseph Rowntree Foundation to carry out research which aimed to explore what independent living meant to disabled people.  The research concerned people with physical impairments under retirement age, who were either living in residential care, receiving social services in their own home, or employing their own support workers (1).

The general context was the NHS and Community Care Act 1990, which had the potential to enable more access to independent living but which also had its limitations.  The other important context was that the Independent Living Fund had been set up in 1988 and was already making a difference to the lives of a small but growing number of people. In addition a few pioneers of independent living received cash payments from their local authority to enable them to employ their own support workers (though technically local authorities were prohibited from doing this).

When clearing out my study last month I found the notebook I kept during the process of doing the research.  These included notes of my experiences of visiting residential homes to carry out interviews which I had set up by letter and telephone with people who lived in these settings.  The interaction with staff when I arrived at the homes was often rather disconcerting, as in this example: 

Two people are in the office; they both look at me as I come in but carry on talking to each other.  Not in a way of finishing off a conversation.  It becomes almost embarrassing the way they seem to be deliberately keeping me waiting.  Eventually, I butt in and ask if they could let KT know I’m here.  “Are you from an organisation or is it personal?” I explain that he’s expecting me.  “Yes you can see KT.  That will be alright”. 

I assume these two women are care workers as both are wearing uniforms though neither of them have name badges or, at any point, say who they are. 

After chatting a bit more, one of them goes off and then comes back to say “He’s on the toilet”.  Ten minutes later “He’s still on the toilet. He takes a long time”.  More time elapses.  “He says he doesn’t know who you are”.  I explain I’ve received a letter from him and have also talked to him on the phone to set up the meeting.  I then ask for ND (another person who has agreed to take part in the research).  She goes off and then comes back to tell me that NF is out.  I say, No it was ND I’ve arranged to see.

This is starting to feel like a Monty Python sketch, particularly as she’s walking around with a parrot on her shoulder - but it’s not dead. [I have no memory of this but it must have been true, I was writing these notes sitting in my car afterwards.]

Another care worker comes up to me and says “You’ve waited long enough.  I’ll go and find ND for you”.  I thank her and ask whether she could also check whether KT is expecting me. 

And so, finally, I get to see both of them.

During the 20 years or so that I carried out research I went into a lot of institutional settings to interview people who lived in them.  Sometimes I had good experiences but mostly they were of a very disconcerting nature.  Partly staff were thrown by the fact that, although I was presenting as a ‘professional’, I also looked like many of the people living there in that I’m a wheelchair user.  So I think they found it rather disconcerting as well.  I was ‘out of place’, not in the role that they were used to for people ‘like me’. 

I’ve kept the interview transcripts of the 50 people I interviewed in 1991, including those of the two men in this particular residential home.  One was in his early 20s and had moved there straight from a residential school:

I ask when I want help here, there’s a buzzer.  Half an hour later they come.  It’s very frustrating.  Sometimes they’re quicker, sometimes not.  I get nagged here - about nothing.  I don’t know what they want me to do.  It’s because I’m young.  They treat me like a child - some don’t but some do….I want to live in my own flat because here the staff tell you what to do.  They’re not supposed to but they do….. I want to have control over my life.

And the other man, who had been there for 18 years said: 

It’s got worse over the years, it’s more now what the staff want. I don’t have control over my life…..  I’ve been trying to leave for 8 years…at first I had a social worker who was no good but now I’ve got a better one and I’m going to get help, she’s sorting that out. 

Both these men were looking to the Independent Living Fund to enable them to leave residential care, in the hope that this would give them more choice and control over their daily lives - in the hope, indeed, that it would give them a future.  The momentary feeling of powerlessness I experienced in my interaction with the care staff that day was nothing compared to the lack of autonomy which pervaded their daily lives.

The Independent Living Fund had been set up in 1988 as a result of changes to the social security system brought in by the 1986 Social Security Act. This brought in a new Income Support system which abolished the additional payments for ‘domestic support’ that had been part of the Supplementary Benefit system. At the same time there was some recognition that the benefit system was not flexible enough to deal with the particular costs that some disabled people had, partly because costs varied according to individual requirements and partly because many people not in receipt of means tested benefits had just as much difficulty meeting these costs. 

The ILF was therefore set up as a charitable trust funded from the social security budget.  We have lost sight of how revolutionary the original ILF was.  It was open to people of all ages (older people made up 37% of recipients by the time the original Fund was closed down in 1993).  It was also open to people with a wide range of support needs, including those who needed just a small amount of help as well as those who had high support needs. Although there was a means test applicants did not have to be in receipt of benefits in order to qualify for a grant.

It also illustrated that it was possible to operate a system where national eligibility criteria triggered a right to a cash payment but the level of payment varied according to individual circumstances. Most importantly, it “demonstrated that large numbers of even the most severely disabled people want to manage their own personal assistance and are capable of doing so”. (2)

The radical nature of the original ILF was made possible because the government mistakenly thought that only a very small number of people would apply and the original budget was set at only £5million.  But by 1992 its annual budget had reached £97million and over 18,000 people were receiving ILF grants. 

For a brief few years therefore, our social security system enabled people, of all ages and any impairment who have additional support needs, to be funded to meet those needs in ways which gave them choice and control over their lives.  The explosion of demand illustrated what disabled people and their families aspired to and how lives could be transformed. 

However, when the original ILF was replaced by the 1993 Fund, eligibility was restricted to those aged 16-65, who received the higher rate of the care component of Disability Living Allowance, who were on Income Support, and who already received at least £200 worth of local authority-funded services per week. This meant access was denied to older people and to, for example people with mild learning difficulties who did not meet local authority eligibility criteria. It also created wide variations according to local authority practice in referring people to the ILF93 (ironically one of the reasons the current and last government gave for abolishing the ILF). In addition, an upper limit of £300 ILF grant was imposed.

In spite of these limitations, the ILF93 has enabled thousands of people to do the kinds of things, lead the kind of lives, most non-disabled people take for granted.

I stayed in touch with some of the people I interviewed in 1991/2, including the younger of the two men mentioned above.  When I lost touch with him, in 2000, he was still in the same residential home but about to be moved because the charity running the home was ‘decanting’ (as they called it) ‘residents’ (as they called them) into ‘independent living flats’ (as they called them) on another site so that they could sell for development the rather desirable piece of land on which the home stood. 

The radical nature of the original Independent Living Fund happened by accident, not by design.  Those who do design policies about how to support disabled people often have the best of intentions and are sometimes profoundly influenced by disabled people’s own ideas and aspirations.  This was the case with the history of direct payments, which were developed by a small number of individuals who demonstrated that giving them the money to enable them to arrange their own support not only enabled them to lead ‘ordinary lives’ but was also cost effective.  

However, once direct payments were adopted as national and local policy (from 1996 onwards), its implementation was put in the hands of people who are working within a culture that assumes the primacy of ‘professional judgement’, that distrusts people to determine how best to meet their own needs, and which - most importantly - is dominated by the need to ration ever scarcer resources. These factors have held back the potential of direct payments ever since their introduction but they have become even more dominant in recent years. 

The result is too often a denial of autonomy, of self-determination - perhaps the most fundamental of human rights. 

Twenty-five years ago, very few of the people I visited in residential homes, or those receiving home care social services, felt they had choice and control in their lives.  The powerlessness and isolation they experienced is what current ILF recipients fear when the ILF is closed down at the end of this month (June 2015).

People like Penny Pepper have described the difference that the ILF has made to their lives  

ILF, through the care workers it paid for to match my needs and lifestyle, was a revelation. I had the same three people helping me wash and dress; the choice to change my mind in what I wore, what I ate, in when I got up – and the freedom to go to the toilet when I needed. It’s impossible to overstate the effect of this liberation.

There is a woman in my village who is struggling to remain living in her own home.  She gets what is considered an ‘intensive care package’ from the local authority - which means she gets a half hour visit at 10a.m., an hour at 12.30 and another half hour at 7.30.  As one of the neighbours supporting her says, ‘she is going stir crazy stuck inside. Having spent her whole life working the fields she is finding herself quite suffocated at the moment”.

As I said in my previous blogpost, human rights, and their abuse, begin in the detail individuals’ lives.  They begin in the way we relate to each other, the language we use. But they are also manifest in the way our society responds to the needs of people who require support to go about their daily lives, who need assistance if they are to exercise the basic choices that most people take for granted.  The closure of the ILF and the refusal to adequately fund social care represent our society’s acceptance that many disabled and older people face isolation and a lack of choice and control over the basic activities of daily life. 

(1) Jenny Morris 1993. Community Care or Independent Living? Joseph Rowntree Foundation ;
Jenny Morris, 1993.  Independent Lives? Community care or independent living, Macmillan.
(2) Ann Kestenbaum 1996. Independent Living: a Review, Joseph Rowntree Foundation.

Sunday, 31 May 2015

Language and the small places of human rights

I’ve spent this month (May 2015) not only feeling devastated by the general election result but also trying to clear out my study - both of which have made me feel that half my life is being thrown away.  

The ‘stuff’ accumulated over most of my working life up until 2010, when I retired, represents the battles waged to articulate disability as a human and civil rights issue.  It has been (and continues to be - I haven’t quite finished it yet) very very hard to divest myself of these various documents - many published in the days before internet publication. It’s made even more difficult because at the same time we are faced with five years of a government seemingly determined to roll back the progress disabled people have made. The five years since 2010 were bad enough - now things can only get worse.

So, partly to make myself feel a bit better but mainly because it’s so important not to lose what we’ve already learnt, I’m going to write a series of blogposts based on some of the stuff which I’ve found it impossible to throw out.

This first one links language and the current assault on human rights. 

In 1995, an organisation called Community Partners, based in Guildford, published this in ‘The Advocate’ Newsletter.
 You and I

I am a ‘resident’
You just live at your place

I live with seven others, a couple of whom I don’t really like
You’ve just got a new place with a couple of friends because you didn’t like the people you were sharing with

I’d like to leave my room in a mess but staff tell me I’m learning something when I clean it up very day
You tell me your room is a disaster area

I am aggressive
You are assertive

I have behaviour problems
You are rude

I’m non-compliant
You don’t like being told what to do

I’m on a special diet because I am 5 pounds over my ideal body weight
Your doctor gave up telling you

When I ask you out for dinner, it is an outing
When you ask someone one - it is a date

I want to talk with the nice looking person behind us at the grocery store.  I was told it was inappropriate to talk to strangers
You met your husband at the cheese counter.  He couldn’t find the brie

I think some of the people who are paid to work with me are my only friends
You have lots of friends; none of them are paid

I don’t have anything to say who I am
You’ve got your driving licence

My Case Manager, Psychologist, Occupational Therapist and House Staff set goals with me for the next year
You haven’t decided what you want out of life

I don’t know how many people have read the progress notes people write about me.  I don’t even know what is in there
You didn’t speak to your best friend for a month after he read your journal.

This juxtaposition between ‘ordinary life’ and that of people identified as ‘service users’ is all too familiar to disabled people and their families.  Mark Neary is only one of many who has drawn attention to it in more recent years but we seem to be banging our collective heads against a brick wall as far as ‘services’ are concerned.  

The issue of language used about people who need support in their daily lives is not a trivial one.  Such language creates a separate group of ‘service users’ and this separation undermines our common humanity.  

It’s the failure to recognise common humanity which lies at the heart of the whole continuum of the way disabled people are so often treated - it starts with dehumanising language and ends with the worst kind of ‘institutionalised’ abuse such as that which took place at Winterbourne View or Orchid View.    

If you see someone as fundamentally different to you then you are unlikely to treat them as you would wish to be treated yourself. A failure to apply this golden rule of ‘Do as you would be done by' is evident in so many  of the more or less routine ways in which people are dehumanised. To take just a few examples:

Do you think that the Chief Executive of Southern Health was applying the golden rule when she wrote about the Root Cause Analysis carried out, to the grieving mother of a young man who died while in the care of her organisation?

Do you think that those responsible for allocating resources put themselves in the position of young people with learning disabilities when they make decisions leading to so many being incarcerated and mistreated for years in what are supposed to be ‘short-term placements’? 

Do you think the politicians responsible for closing down the Independent Living Fund put themselves in the position of people like Mary Laver whose whole way of life is threatened as a result?

It’s important to make links between the ongoing struggle amongst disabled people and their allies for recognition of our common humanity and the current onslaught on human rights generally, in the context of the Conservative Party’s manifesto commitment to “scrap the Human Rights Act”.

The underlying principle of human rights is that they are universal - by definition they apply to us all by virtue of our common humanity. A failure to acknowledge and uphold an individual's or a group of people’s human rights is a denial of their humanity.  For disabled people, this denial often happens implicitly - with assumptions that a particular right is not ‘relevant’ or that denial is in someone’s ‘best interests’. 

The website,, is running 50 stories about the real-life application of human rights law and several directly concern disabled people.   

For example, disabled people’s right to a private and family life was upheld when the High Court ruled in 2003 that a local authority had breached a disabled woman’s right to a private and family life by failing to correct a situation where she was unable to use the bathroom in her house because it was inaccessible to her.  

Another example is from 2014 when the Supreme Court ruled that  “Human rights have a universal character and physical liberty is the same for everyone, regardless of their disabilities”. Therefore, as put it, “Thanks to the Supreme Court in this case, all disabled adults in care are now included in the word ‘human’ of human rights and entitled to the same dignity and status as the rest of us”. 

The fight to prevent the government repealing the Human Rights Act is a fight on behalf of us all.  At the same time, we must remember that, as Eleanor Roosevelt said: human rights begin “in the small places, close to home - so close and so small that they cannot be seen on any maps of the world”.  Human rights, and their abuse, begin in the detail individuals’ lives.  They begin in the way we relate to each other, the language we use: “Unless these rights have meaning there, they have little meaning anywhere”.

Wednesday, 1 April 2015

A housing policy question for all politicians

One of the depressing things about having been politically active during the 1980s is that so many of the things we warned about happening, as a consequence of Tory policy then, have come to pass. 

Like many other policy areas, 1979 was a watershed in the landscape of housing opportunities in this country.  From 1918 to 1980, owner occupation and council housing grew while private renting gradually declined.  By 1980, a third of housing was rented from local authorities, just over half was in owner occupation while only 11% was privately rented.

By 2012, the private rented sector had increased to 17%,  while 10% was rented from housing associations and council owned housing had fallen to 8% of the total housing stock. 

It was the Right to Buy, and associated policies, which were responsible for this fundamental change in the pattern of housing tenure. Councils were always able to sell their housing to existing tenants but it was voluntary, and sales required the approval of central government.  However, the Conservative Party manifesto of 1979 manifesto made the sale of council houses a key part of the election campaign, offering generous discounts and no restrictions on resale. 

Conservative housing policy was also aimed at reviving the private rented sector by introducing shorthold tenancies, in order to make housing a more profitable investment for private landlords.

These polices were part and parcel of a wider agenda on the welfare state, which started in 1979 and continues to play out today. As two academics at Bristol University wrote in the early 1980s: “The reduction in the size of the public housing sector has become part of a general strategy to restructure and reduce state provision across the whole range of welfare services, from education, and health, to refuse collection”. (1)

Indeed this was the first, but by no means the last, government policy which promoted ‘subsidised individualism and residualised collectivism”. (2)

Thirty-five years after the Conservative's 1980 Housing Act we are facing the results of this fundamental shift in housing policy. The residualisation of council housing is reflected not only in the reduction in the size of the tenure but also in the increasing proportion of council tenants in receipt of social security benefits - partly because the better off ones bought and partly because of the rise in rents. 

Housing costs have increased across all tenures: amongst owner occupiers and private renters because of the continuing shortage of supply; amongst housing association and council tenants because of changes in housing finance.

There has been a fundamental shift of expenditure from capital investment in housing (building new homes) to revenue expenditure in the form of housing benefit (propping up higher rents in social housing and subsidising the profits of private landlords).  The latest manifestation of this shift is the introduction of ‘affordable rents’ for new housing association and council tenancies, set at a maximum of 80% of market rents and acknowledged by government as costing more in the long term because of the resulting increase in housing benefit expenditure.

The shift from capital investment to subsidising high rents has accelerated in the last five years, reflected in the dramatic reduction in the numbers of social housing properties built: in 2009-10, there was a total of 39,492 housing starts of properties to be let at social rent levels; by 2013-14, this had fallen to 3,961.  Even including housing to be let at ‘affordable rent’ levels and ‘affordable’ home ownership there had been a 22% reduction over this period.

The Coalition government has decried the increase in housing benefit, focussing on the ‘failure’ of individuals to find a job or work hard enough to get themselves ‘off benefits’.  In reality, it is government policy which has created the need to subsidise rents, but the focus on individuals suits the Conservative Party’s desire to bring about a residualisation of collective provision (i.e. the welfare state) until it only caters for a small stigmatised minority.

Not only have individuals suffered as a result of the shift in housing policy since 1979, but local authorities (and indeed government) now have less influence over whether housing markets will meet housing need. An erosion of local authority influence over rent levels (because of changes in housing finance) and over local housing markets generally makes it harder to, for example, ensure sufficient affordable housing to support local employment, or to prevent second home owners pushing up house prices.

The tragedy is that there seems to be very little resistance to the ideology which underpins these changes in housing policy and in particular very few people are defending the idea of secure, affordable, publicly owned housing. And now the Conservatives have floated the idea of extending the Right to Buy to housing association tenants, although they have been warned that this would severely threaten the financial viability of the sector. 

There is general agreement that the fundamental cause of housing problems in this country is the lack of supply, so Tory and Labour vie with each other to promise to tackle this by increasing house building.  The main sources of increased supply are, however, assumed to be in the owner occupied sector where government action is primarily limited to demand-side policies whose main impact is likely to be an increase in house prices.  At the same time the rent levels for any new social housing will not be set, as they previously were, by taking into account what local wage levels could sustain.  Instead, rents will be set in relation to market rents which, in high rent areas (but particularly London and the South East) will belie their Orwellian label of ‘affordable rents’ for many many people. 

The advantages of social housing used to be that you paid a rent which was affordable in the context of local wage levels, you got security of tenure, and you didn’t have to worry about the costs of repairs and maintenance.  In order to undermine this important option, Conservative policies since 1979 have resulted in an increase in rents, undermined security of tenure, and promoted individual self-interest to remove properties from future generations of households in housing need.

Buried in the Coalition government’s Impact Assessment on the introduction of ‘affordable rents’ is the statement: “ An increase in social supply reduces the numbers in housing need by three times as much as a rise in private supply of the same amount, with these housing services better targeted at those in need.”

So, a key question for all politicians during the rest of this general election campaign is: An increase in the supply of social housing is the most effective way of reducing the numbers in housing need, so will you invest in secure, affordable, publicly owned housing?

  1. Ray Forrest and Alan Murie, 1984. Right to Buy? Issues of Need, Equity and Polarisation in the Sale of Council Houses, University of Bristol, p.59.
  2. Ditto, p. 60.