A recent article in the Guardian drew attention to the BBC’s current efforts to increase the numbers of disabled people on and off-screen. Tania Motie and Tanni Grey-Thompson argued that there are three stereotypes applied to disabled people – we are heroes, scroungers or brave victims. The BBC, they wrote, has a role in challenging this, and that:
Sophisticated, multi-faceted, authentic portrayal influenced by disabled people will really help to break down barriers and allow disability to become part of the DNA of our society.
This reminded me of how, 23 years ago, in 1992 – which like 2015 was also a general election year – the BBC launched a series of programmes made with and about disabled people, together with a booklet and poster advertising. The series and the booklet were called Disabled Lives:we wanted to call it Disabling Society but Channel 4 had got there first with their own series that same year. The initiative resulted from an Advisory Group made up of disabled people brought together by the BBC to help them develop programmes which challenged the stereotypical and unrealistic ways in which disabled people’s lives were portrayed.
It sounds familiar doesn’t it? But there were some differences.
The key difference is that, in 1992, disability was increasingly being identified as a civil rights issue, whereas today public debate is dominated by arguments and counter-arguments about whether we are ‘scroungers’ or ‘vulnerable’.
The 1992 booklet said that it, and the BBC series of programmes, was about:
one of the most exciting civil rights issues of our times, the right of disabled people to participate equally and fully in the communities in which we live….Today, there is a growing movement of disabled people who insist that our lives have value and that we want to be treated as equal citizens with equal rights.
This was before the Disability Discrimination Act which was finally passed in 1995 after many years of campaigning. The programmes and the publicity gave a voice to this demand for an end to discrimination, but also emphasised the importance of changing the dominant cultural representations of disabled people, arguing – as Elspeth Morrison (one of the Advisory Group’s members) put it:
If we have no representation of ourselves other than those images used in charities’ advertising, crippled witches in children’s books, brave and tragic media stuff, theatre and film’s metaphorical use of disability as social inadequacy, social decay – if there is no expression of life as we live, it, how do we begin to validate ourselves and learn about each other?
One of the photographs (taken by David Hevey) used in the booklet and in the posters – was of the Direct Action Network holding up a bus in Manchester. No buses were wheelchair accessible at that time and access to public transport was an important part of the campaign for anti-discrimination legislation.
Independent living (having choice and control) was also a key focus, for people with the whole range of impairments and across all ages. The Independent Living Fund had been established in 1988 and more and more people with high levels of support needs were accessing it and starting to live the kind of lives their non-disabled peers took for granted. In general, more disabled people were demanding, and getting, their entitlements to support to enable them to go about their daily lives.
Organisations of disabled people (as opposed to the charities speakingfor disabled people) were increasing in number and influence in the early 1990s, reflected in the fact that the people on the BBC’s Advisory Group were mainly from organisations of disabled people. The initiative encompassed Deaf people, people with physical and/or sensory impairments, people with non-evident impairments and health conditions, people with learning difficulties, mental health service users and older disabled people. As People First (the organisation of people with learning difficulties) said:
We are for difference
For respecting difference
For allowing difference
Doesn’t matter anymore.
In the early 1990s, the most influential stereotype of disabled people was of us as objects of pity, as tragic victims who, at best, could be admired for ‘overcoming’ against all odds, at worst were considered to have lives not worth living. The response of a government Minister to one of the petitions calling for anti-discrimination legislation was to say that he didn’t believe employers discriminated against us, rather they felt sorry for us.
Nevertheless, in 1992 things were shifting. In the run-up to the general election, the Conservative Party (in government since 1979) devoted a specific section in its Manifesto to commitments to disabled people, celebrating that:
Under the Conservatives, more disabled people than ever before are getting the help they need and deserve. Since 1979, the number receiving Attendance Allowance has more than trebled; the number receiving Mobility Allowance has risen six fold; the number receiving Invalid Care Allowance has risen 25-fold. Today we spend some £12,000 million a year on benefits for long-term sick and disabled people. Even after allowing for inflation, that is 2½ times as much as Labour spent in the 1970s.
The Tories promised to introduce “new disability benefits [Disability Living Allowance and Disability Working Allowance] which will, in the next Parliament, bring extra help to at least 300,000 people. By 1993-94 these and other improvements will mean that we will be directing an extra £300 million a year to long-term sick and disabled people.”
They were proud of the “great success” of the Independent Living Fund and gave a manifesto commitment to maintaining it.
The Labour Party had very little to say about disabled people in their1992 manifesto. There was a nod to ‘training’ opportunities, to health services for people with long-term conditions and to better community services for people using mental health services and for people with learning difficulties. The Liberal Democrats’ manifesto had more, committing them to introduce a Citizen’s Income with a specific disability component, human rights legalisation (to include disability) and a Charter of Rights for disabled people.
In those days, very few people argued that too much was spent on disability benefits. Very few people thought that disabled and sick people were making false claims for out of work or disability benefits.
In fact, in 1992 the Conservative government felt that not enough disabled people were being helped and introduced new benefits for which more people were eligible. Today the Coalition government argues that too many people are receiving help with the additional costs associated with impairment and disability. The Disability Living Allowance – which the Conservative government of the early 1990s was proud to introduce – has been abolished and replaced with Personal Independence Payment with the aim of reducing the budget by 20% and accompanied by such long delays in responding to claims that aJudicial Review has been granted of the process.
In 1992, the government were proud of the Independent Living Fund and vowed to keep it. Today, they have abolished it and many people with high support needs are at risk of losing the ability that ILF funding gave them to live ‘ordinary lives’.
In 1992, public debate was about whether disabled people were to be pitied as the objects of charity and needed to be ‘looked after’, or whether we should have equal rights to access education, employment, independent living. Today, public debate is about whether we are avoiding our responsibilities to seek employment and need conditions and sanctions to get us ‘off benefits’, or whether we are ‘vulnerable’. Instead of recognising the additional support, and the removal of barriers, which are required in order for us to access the same opportunities as others, we are – in order to avoid being labelled as ‘scroungers’ – once again forced into the role of tragic victims, where the legitimacy of our requirements is to be measured by how ‘vulnerable’, ill and/or impaired we are.
So if we are to avoid being identified as ‘scroungers’, we have to prove how ‘vulnerable’ we are made by our impairments, illness and/or age. Yet ’vulnerability’ is created by the society in which we live – by lack of appropriate support, and by prejudicial attitudes. ‘Vulnerability’ is created, for example, by removing benefits from someone because they failed to fulfil conditions which illness, impairment and/or poverty made difficult for them to do. ‘Vulnerability’ is created by threatening to stop providing support to enable someone to go to the toilet when they need to. ‘Vulnerability’ is created by a lack of suitable, affordable housing for a family affected by illness and disability.
Tackling discrimination, removing barriers, providing appropriate support which gives us choice and control in our lives – none of these are on the agenda for public and policy debate anymore. Instead, our social worth is to be measured by whether we are ‘hard-working’, which means engaged in productive labour. Other important social roles – looking after others, bringing up children, contributing to our friends, families and communities – are not deemed worthy of support or celebration.
The BBC’s current initiative – all these years after the 1992 initiative – to increase the numbers of visible, ‘happen to be’ disabled people on screen and to increase their employment off screen is laudable. But we also need to change the language of public discourse about sick and disabled people.
In particular, we need politicians, and all those participating in public debate in the run up to the election in May, to change the way they talk about disabled people. We need to revisit the language and images the disability movement tried so hard (with some considerable success) to promote during the 1980s and 1990s – language which returns to some of the hopes reflected in the BBC’s booklet all those years ago:
Disabled people are fighting for a society which celebrates difference, a society which does not react to physical, sensory or intellectual impairments, or emotional distress,, with fear and prejudice. We want a society that recognises the difficulties we face, but which also values us for what we are.
Our hopes for the future are based on the justice of our wish for control over our lives, the strength of our demands for equal participation, the passion of our belief in the value of our contribution to the communities in which we live.
Independent Living Fund (ILF) users and DPAC have led the campaign to #save ILF since 2011. In 2010 the ILF was closed to new applicants. DPAC tried to get some people to challenge this through the courts. We didn’t succeed. We were just starting up then-no other disability organisation made a move, in fact there were odd noises coming from some of them that seemed to suggest that ILF had had its day, in line with the Government rhetoric. Even today few organisations with the exception of Inclusion London have been consistent in supporting ILF users with the message that the loss of ILF will affect everyone.
DPAC continually receive emails from people who find their care hours slashed or completely removed-they can move from substantial to ineligible in a very short space of time. The cry that ‘choice and control’ will prevail can only be seen as the last vestiges of misguided hope by those who work on this thing called ‘co-production’ with Government departments- surely they cant really believe what they are saying anymore- the carnage is all around us. The fact that the Care Act replaces the term ‘independent living’ with the bizarre term ‘well-being’ (despite the best efforts of Inclusion London to stop it) shows how the notion of co-production has made fools of us all. The fact is that if ILF funds do move to the black hole of local authorities without being ring-fenced on the expected date of full closure of ILF in June 2015-we all lose.
Of course after the first court case the DWP did an equality impact assessment that said people weren’t guaranteed the same amounts or support, that some may end up with no support, and that it was business as usual.
A successful conference held in London on the 27th September called for a new UK network to challenge the attacks on disability rights in the UK. The conference supported by DPAC, Inclusion London, ALLFIE, Norfolk Coalition of Disabled people and the Joseph Rowntree Trust brought together leading Disabled Peoples Organisations and leading disability activists.
Key speaker Jenny Morris said that the ‘disability movement’ was more vibrant than ever, and that this Government had launched a number of attacks on disabled people and their rights. However others suggested that there may not be a disability movement anymore, but pockets of activity. What was clear was that challenges by disabled people and disabled peoples’ organisations (DPOs) must increase. Speakers also raised issues of how ‘the movement’ could be more inclusive in the speakers ‘from the frontline’ slots.
DPAC was there to add commentary and information on what was happening to disabled people under the regime of Atos and the ESA processes as well as the everyday crisis disabled people were facing under this Government. The whole day was brilliantly co-chaired by Tracey Lazard ( CEO of Inclusion London ) and Tara Flood ( director of the Alliance of Inclusive Education) . Speakers included Jenny Morris, Andrew Lee, Eleanor Lisney, Chris Edwards, Debbie Jolly, Linda Burnip and Geraldine O’Halloran, yet, there was also plenty of time for discussion.
Catch up on conference and presentations with the livestream (with BSL)
Another option to keep up with what’s happening and have a chance to dicuss your views is to tune into Make Yourself Heard on Tuesdays 2-4p.m with Merry Cross www.Reading4u.co.uk
Join up to the new UK network: be part of the increasing outcry on our injustices!
Send an email to firstname.lastname@example.org with subject line ‘UK Network’ to be kept in the loop on this exciting and much needed new network of DPOs and activists.
We can also put you in touch with any local DPAC groups in your area or help you set up your own local DPAC group. We now have 26 DPACs across the UK and along with our sister organisation Black Triangle in Scotland we have made sure that disabled peoples’ issues are vibrant and will continue to be-never again must we allow our ‘movement’ to get sleepy- join the challenge!
In a discussion about my critique of disability policy, someone expressed surprise that I hadn’t written about the closure of the Independent Living Fund. They were right that this is a serious omission from any analysis of the current attack on disabled people’s access to civil and human rights. My only excuse is that every time I started to include the issue there was too much I wanted to say about the history and demise of the ILF.
The setting up of the Independent Living Fund in 1988 was an example of ‘progress by default’ in the heyday of the Thatcher government’s attack on the welfare state. This attack included abolishing something called the Domestic Needs Allowance. This (unpublicised and therefore underclaimed) benefit was paid to a small group of disabled people who qualified for an addition to their Supplementary Benefit because they needed help with ‘ordinary domestic tasks’ like cooking and cleaning. Its abolition was part and parcel of the then Tory government doing what this Coalition government is doing – attempting to cut the benefits bill while claiming to be introducing new systems which would enable ‘better targeting’. Then, as now, it was the House of Lords which mounted significant resistance resulting in a number of changes to the legislation, including the announcement by the government that they would set up a Fund to help ‘people who are severely disabled’, who were on low incomes, in receipt of attendance allowance, and who had to pay for their ‘domestic care’.
The government thought that only about 250 people would qualify; Disability Alliance thought it would be several thousands. By 1992, over 22,000 people were receiving an ILF grant and the original £5million budget had reached £97 million.
As with Disability Living Allowance, the government found it had introduced a method of supporting disabled people’s additional costs which was popular because it increased autonomy and quality of life. But, as with DLA, instead of welcoming the success of the policy, the government’s response to the larger numbers of people successfully claiming than expected, was to attempt to reduce the numbers of people qualifying. In 1992, the original ILF was closed overnight and while a new Fund was set up, eligibility was tightened up and disabled people had to already be in receipt of local authority funded services.
Yet still its popularity grew, as did the principle at the heart of the ILF – giving people the money to enable them to purchase their own support.
In 1993 I published research[i], comparing the experiences of people who were dependent on traditional services for the help they needed with those who received grants from the Independent Living Fund or cash payments from their local authority (at that point these direct payments were technically illegal until the 1996 Community Care (Direct Payments) Act was passed). The contrast was striking in terms of people’s access to privacy and a family life, and to the opportunities they had for participating in society: ILF grants gave people control over the support they needed and meant their human and civil rights were protected and promoted.
These findings were echoed by all the research carried out during the 1990s and in more recent years – ILF grants have given people choice and control and have, as the most recent review found, been particularly good at reaching people with significant learning difficulties, who made up almost a third of those receiving grants in 2006
The ILF was not a perfect system: amongst other things, it discriminated against older people (by imposing an upper age limit of 65 at the point of application) and against those with the highest support needs (by imposing a weekly limit on how much support can be funded). The independent review carried out in 2006 recommended – in the longer term – merging it into a new system of delivering social care based on the individual budgets which were being piloted at that time.
And the ILF is undoubtedly an anomaly. In its initial phase it was entirely part of the national social security system but funded needs which were otherwise met by locally delivered social care systems. Since 1992, it has been more of a hybrid in that, while it is funded within the national social security system, the gateway to an ILF grant is through the locally delivered social care system.
When I was working with the Prime Minister’s Strategy Unit, on what became Improvingthe Life Chances of Disabled People, the logic of our analysis of independent living and the policies needed to deliver it led us to discuss whether there should be a national delivery mechanism – akin to the Independent Living Fund. We drew back from this, partly because of political pragmatism but also on the grounds that it would undermine local democracy.
I’ve never been entirely happy with this latter reason. It is only a historical accident – not because of considered policy design – that disabled people’s additional costs are currently addressed by two entirely different systems: Disability Living Allowance, non-means-tested and delivered through a national social security system; and community care (whether as services or direct payments) means-tested and delivered through a local system subject to local and professional discretion.
The Dilnot Commission, in response to the years of evidence of a ‘postcode lottery’ in access to social care recommends a national system of assessment. We already have one – it’s called the Independent Living Fund.
For years, there have been attempts to encourage local authorities to use direct payments (and now personal budgets) to enable disabled people to have choice and control over the support they need to go about their daily lives. Yet there remains a postcode lottery of not only the level of support available but the extent to which an individual can have control over the resources available.
As Colin Barnes has written, “One way out of this mess would be to take the distribution of direct payments out of the hands of local authorities and centralise it. This could be achieved by setting up a new national body similar to the ILF and accountable to organisations controlled and run by disabled people such as the National Centre for Independent Living (NCIL)”. [ii]
In the next few months the government will be publishing a consultation on the Independent Living Fund, and its long awaited White Paper in response to both the Dilnot Commission and the Law Commission’s report on community care legislation. The debate so far has mainly been related to how we can fund adult social care but there is an equally important debate to be had about the principles of delivery. I would suggest, as a starting point, these should include:
– nationally consistent entitlements: ‘postcode lotteries’ are unjust and create disincentives to move in pursuit of employment opportunities or because of family commitments;
– universality, i.e. no means-test: disabled people face additional costs and a modern welfare state should fund these costs, out of general taxation, to create a level playing field;
– choice and control: self-determination is a basic human right which disabled people cannot experience unless they have choice and control over the support needed to go about their daily lives.
The Association of Directors of Adult Social Services told the Joint Committee on Human Rights Inquiry intoIndependent Living that, in the current climate, they are unlikely to provide replacement funding for all those who would previously have qualified for ILF grants. This is the reality facing disabled people and which must be addressed by the government in its plans for the future of adult social care.
In the meantime, I would urge people to sign Disabled People Against the Cuts’ (DPAC) letter which urges the government to carry out a separate consultation on the ILF (rather than just including it in that on future funding of adult social care), and to continue the separate funding that the ILF provides. You can get a copy of the letter and sign up by visiting the DPAC website or emailing email@example.com.
[i] Morris, J. 1993. Independent Lives? Community Care and Disabled People, Macmillan.
[ii] Barnes, C. 2007.’Direct payments and their future: an ethical concern?’ in Ethics and Social Welfare, 1(3), pp. 349-354.