A partnership of equals

There is lots wrong with ‘The Plan’ to achieve what the government failed to in securing the release of people with learning disabilities from Assessment and Treatment Units, not least the self regarding way it was announced by Sir Stephen Bubb.  The lack of involvement of people with learning disabilities and their families in the decision to hand this role to voluntary sector organisations under the ACEVO umbrella mimics the very problems which have led us to this point – people being regarded as objects to be ‘done to’ not as active rights-holding citizens with unique insights, ideas and a major contribution to make to solving this challenge.

The way this came about suggests panic in the upper echelons of government and the NHS and a desire to get this ever more hot potato off the desks of Norman Lamb and Simon Stevens.  Panic does not however make for sensible answers.  Several hundred fewer people in ATU’s by a specified date does not mean several hundred people with learning disabilities and their families with the support they require to live successfully in the community.   Yes it is of course desirable to secure people’s release from ATU’s at the earliest opportunity, but that could be done without providing any viable alternatives and it is the creation of these rights-respecting alternatives that should be the mark of success.  The mention of ‘investing in buildings’ and of 10 year contracts in Bubb’s blog should raise major alarm bells sounding as it does like the Hungarian model of de-institutionalisation’ not a genuine attempt to foster inclusion.

The reality is that neither Stephen Bubb’s breakfast club or people with learning disabilities and their advocates can make this happen on their own.  In a contrite follow up blogpost Bubb has said he recognises this, acknowledging the importance of ensuring ‘the voice of the client, carers and families are heard’ but the proposals he sets out still suggest a passive role.

What is required is a genuine partnership of a type all too rare: people with learning disabilities employed in key roles by the organisations commissioning community based solutions, mechanisms such as integrated personal budgets and the support to direct and manage them which allow individuals and families to commission their own support, peer support for those moving from institutions back into the community and their families and for people with learning disabilities and their families to have a seat around the table at the breakfast meetings where such plans are hatched.

In short, what is required is a partnership of equals.




Signal failure

The Assisted Dying Bill will receive its Second Reading in the House of Lords on 18 July. I’ve written about ‘assisted dying’ before here and here.   Having recently engaged in lengthy debate with advocates for the Bill, albeit within the 140 character confines of Twitter, I wanted to add a few further reflections on their arguments.

The Bill before the House of Lords is based on legislation which has been in place in Oregon since 1998, providing physician assisted suicide (PAS) to legally competent adults who are expected to live for less than 6 months. Importantly this legislation is subject to annual monitoring regarding the numbers, characteristics and motivations of those seeking PAS.

This monitoring reveals that since 1998 39% of people seeking PAS cited concern about being a burden on family, friends of care-givers as a reason.  In 2013 the figure was 49%. It also reveals that the main reasons given by people seeking PAS in Oregon to date have been loss of autonomy (91%), being less able to engage in activities making life enjoyable (89%) and loss of dignity (82%).  Inadequate pain control or concern about it was cited in only 23% of cases.

If an objective of ‘assisted dying’ is – as Dignity in Dying argue – to relieve suffering, the suffering most cited relates to what people feel able to be or do and to their sense of self, rather than physical pain.  As such we must conclude that their motivations are not wholly intrinsic in nature.

In addition to regarding these motivations as legitimate and accepting them at face value, the Bill’s advocates also argue that it is targeted only at those expected to die within 6 months and hence that it has no implications for others and for disabled people in particular. Yet while the option of ‘assisted dying’ may only avail itself once people enter a 6 month zone of anticipated death (and only then does it stop being called ‘assisted suicide’), people will for the most part have been living with a progressive condition for a considerable time – sometimes their whole life.  It is  during this time that their sense of being a burden, of losing autonomy and dignity will have developed or that they may have reached a ‘clear and settled intention’ to end their own life as a consequence, not necessarily during the final 6 months of their life.   Indeed, many campaigners are seeking a change in the law related to assisted suicide outside of the 6 month timeframe for just these reasons.  For example, the Daily Mail reported Tony Nicklinson’s daughter  as saying ‘Dad hasn’t got a life – his life consists of being washed by strangers, undignified moments watching the world go by around him. Life should be about quality and happiness, not just for the sake of it.’   Hence, while the Assisted Dying Bill will not allow a persons desire to die to find expression until they are deemed to have only 6 months left to live, it nevertheless legitimates their goal of doing so, irrespective of the motivations, from whatever point they arrive at a so called ‘clear and settled intention’.

This is why both the wider social and economic context in which such decisions are made and the signal that legislating for assisted dying might send cannot be ignored in any debate about the merits or dangers of this Bill.  People do not come to be viewed as or feel a burden, or to lose their sense of dignity or autonomy in a vacuum.  Such feelings are shaped by context, experience, the availability and quality of support and by expectations.  These external conditions prevail upon people with progressive conditions just as they prevail upon people with non-progressive conditions.

On Monday it was reported that 515,000 fewer people even receiving care in England since the economic downturn hit.   We live in a society that is rapidly dis-investing in older and disabled people – including those with progressive conditions -, rendering care an ever more private rather than public matter, with individuals and families left to cope alone increasing feelings of burden among carers and cared for.  We already lived in a society which devalues older and disabled people to the extent that medical professionals sometimes assume people prefer death over living without actually discerning their views. This is a particular risk for people with progressive heath conditions.

Surely even the Bill’s advocates recognise the dangers of providing a right to assisted dying in the absence of a right to assisted living?  That people may arrive at a settled view that they wish to die well in advance of reaching the 6 month zone because of the social and economic climate is a legitimate concern, and the statistics from Oregon regarding the motivations of those seeking assisted suicide do not provide any reassurance on this.

It is worth recalling at this point how the last unsuccessful attempt to change the law - Lord Joffe’s ‘Assisted Dying for the Terminally Ill’ Bill of 2005/6 - supported by Dignity in Dying did not include the 6 month time-limit, only that the person had a terminal illness, the capacity to decide and access to palliative care. While the new Bill’s advocates claim there are empirical reasons for it to impose a 6 month limit I believe the real reason is the limits of current public opinion and recognition that the scope of the Joffe Bill exceeded it. Given this and ongoing campaigns and strategic litigation such as that relating to Tony Nicklinson it is therefore not illegitimate as some have argued to express concern about a slippery slope were the Bill to become law.  There is every reason to anticipate that the scope of the law would, if enacted, eventually extend to those with terminally illness generally (if not also to people with serious impairments or health conditions that are not terminal in character).

It is true to say as did the recent British Medical Journal editorial in support of the Bill  that ‘That much mentioned victim—the elderly lady who believes she has become a burden to others and offers herself up for assisted dying—will not qualify’ under the Assisted Dying Bill.  But one does not need to be concerned that the Bill’s internal safeguards would fail to be worried about where the motivations to end ones life come from, the signal this Bill would send in the current context, accepting as it does that feeling a burden is sufficient reason to ask to be helped to end ones life, and the potential for the laws scope to expand to encompass such a scenario in future.

Laws – such as Equal Marriage, the Lobbying Act or prohibiting smoking in public places, send social signals, deliberately or otherwise which mean their impact extends far beyond their specific provisions.  That this Bill would indicate that our compassion should extend to helping people to die, but at the same time fail to give people the support to live seems to me a dangerous signal indeed.





Killing people with kindness

I’ve spent a fair amount of time today being distracted by (and indulging in) debates on Twitter regarding the pros and cons of the Assisted Dying Bill.  Of most interest and challenge was my discussion with Dr Paul Teed who describes himself as a ‘A British junior A+E doctor and evidence based supporter of 

In response to my question ‘what would success look like?’ regarding the impact of the Assisted Dying Bill were it to become law Paul argued that it would bring ‘checks and balances’ to a situation that was and would in any case continue to happen with or without the law (i.e. people securing third party assistance to take their own life).  The law he argued was in the interests of patient safety and that ‘it would not lead to massive scale unchecked voluntary (+non voluntary) euthanasia (as it would reduce this practice) = improvement.’

I confess to finding this argument quite compelling.  It reminds me of the case that was made to legalise abortion law in the late 1960′s, or the case for needle exchanges for intravenous drug users to guard against HIV transmission.  It does not demand that one morally supports assisted dying (or abortion, or drug use); only that one might be inclined to put people’s safety above all other considerations.

Yet if one pursues this logic, why be confined to people who wish to take their own life because they have a terminal illness?  All suicides are presently unchecked.  All who seek to commit suicide may do so in a manner which involves avoidable pain or suffering (or which fails sometimes leaving a person with horrific injuries).  Why are we willing to help people who are terminally ill through medical intervention but not people with a ‘settled view’ that they wish to end their own life for other reasons?

We’re not willing to do so because we do not wish to be complicit in the suicide of people generally.  We may not be able to stop people taking their own lives, nor is doing so an illegal act, but we do not generally as society respect the choice to do so sufficient that we sanction physician assisted suicide on demand.  We discourage it.  We seek to prevent it happening in prisons or other closed institutions and investigate it when it does. We do not accept it.  Nor would we agree to a change in the law such that helping someone take their own life was generally deemed acceptable.

So ultimately we come back to the rationale of permitting assistance where a person has a terminal illness and is expected to die naturally within 6 months.  And whilst the Assisted Dying Bill does not employ the language of ‘suffering,’ the framing and narratives of campaigns for assisted dying are literally drenched in it.  Relieving ‘unnecessary suffering’ is the stated objective of those who support a change in the law.   I am quite certain that it – rather than a concern for ‘free will’ –  is also the basis for (widespread) public support as well.

And what may on the face of it seem like the most noble of objectives is I believe also why no matter what safeguards are included, or assurances given, the passing of this legislation would let the genie out of the bottle and place others who either do not seek assisted suicide, or whose circumstances the Bill as drafted excludes, at risk.

While at present the proposed Bill is restricted to adults with competence, considered to have reached a ‘settled decision….reached voluntarily, on an informed basis and without coercion or duress’ in two EU countries which already have such laws attention subsequently turned to those without competence, including children, on grounds of relieving suffering. In making the case for euthanasia for terminally ill children Belgian Senator Jean-Jacques De Gucht argued that ‘There is no age for suffering and, next to that, it’s very important that we have a legal framework for the doctors who are confronted with this demand today” (my emphasis).  If relieving suffering is the primary aim, it does seem somewhat counter-intuitive to require that children endure that which adults might be relieved of?  And if parents can give consent to medical treatment, or to its withdrawal, then why not to actively terminating a child’s life on grounds of unnecessary suffering?  It also seems entirely feasible that arguments should be made to relieve the suffering of people deemed to lack competence, as Doctors have done in Holland and I am quite sure will be argued in the UK.  The obvious risk is that should this Bill become law it will act to normalise the idea that the active ending of life is a legitimate method of ‘relieving suffering’ and as a consequence see euthanasia expand into other realms.

Paul and others have also argued that the Assisted Dying Bill poses no threat to disabled people generally given the strict limitations involved. Putting aside the fact that there are many people who be regarded as disabled who also have ‘terminal illnesses’, I believe this is to ignore the danger created by the social signal this legislation will send.

Disabled people are frequently described in the media and elsewhere as ‘suffering’ from their condition.  While recognising how Dignity in Dying has been careful to distinguish its current goals from high profile cases such as that of Tony Nicklinson – who despite seeking assisted suicide would not have been able to benefit from the proposed law – it seems clear to me that such cases have nevertheless helpfully rallied public support for assisted dying.  This is precisely because the public – and the media – sees ‘suffering’ in such cases and they do so not only because of the way his story was told, but because it confirms pre-existing ideas of what it means to be disabled.  The recent case involving a mother killing her three disabled children is a case in point – all newspaper reports focused attention on the nature of her children’s health condition and the degree of ‘suffering’ involved or life expectancy anticipated as if either would have justified her actions.   One must conclude therefore that a great deal of public support for this legislation arguably draws from the same well of misplaced compassion as that which underpins the continuing prejudice and discrimination faced by disabled people in all walks of life and that support is not confined to the constraints imposed by this Bill.

This is why the citing by Dignity in Dying and others of public opinion polling which finds widespread support for assisted dying should be regarded with caution.  For example, they quote the British Social Attitudes survey 2010 which found ’82% of the general public believe that a doctor should probably or definitely be allowed to end the life of a patient with a painful incurable disease at the patient’s request.’ This data is presented at face value – the opinion of respondents taken as informed and unsullied by prejudice or stereotypes.  Contrast this with the finding of the BSA 2012 that ‘three out of four (75%) respondents advocate a reduction in immigration overall, a rise from 63% since 1995. 51% want a large reduction.’   Do we regard the opinion of these respondents regarding immigration as informed and unsullied by prejudice or stereotypes? No – we naturally suspect that opinion is shaped by various forces and worry about its significance.  So we should with respect to attitudes to assisted dying.

Perceptions regarding the suffering of people with impairments and health conditions are not only very often misplaced and grounded in stereotypes and prejudice – which devalue disabled people’s right to be included in and supported by society – they are sufficient to permit people to rationalise the very ending of a human life.

Paul and others may see no risk of a massive rise in ‘unchecked’ voluntary euthanasia, but he passes no comment on whether as a society we might reasonably be concerned by a significant rise in ‘checked’ voluntary euthanasia following the passing of the Bill into law. He and others also disregard the possibility if of it providing a stepping stone towards the expansion of euthanasia more generally.  I am unconvinced and my fear is that whatever the safeguards in this Bill, its passing could make for a much less safe and supportive society in which to be a disabled person.










We need to talk about the elephant (trap) in the room

Last Friday evening I attended Tom Shakespeare’s lecture on disability equality at the British Library (don’t tell me I don’t know how to let go at the weekend….).

As Tom acknowledged at the start – and presumably because his lecture contributed to a wider series on the theme of equality – a great deal of his speech was ‘back to basics’ as far a disability equality goes.  As such it was somewhat refreshing to be listening to a lecture talking about themes such as accessibility and transport – things we no longer seem to talk about much.

Shakespeare is known for challenging social model orthodoxy and for reasserting the need to recognise the impact of impairments or health conditions and I had looked forward to this contribution.  But here he built what can only be described as an entirely fictional straw man – that the social model of disability has led us to a situation where by focusing on socially constructed barriers our approach to equality overlooks individual need.

One look at the specifics of Britain’s disability equality law shows entirely the opposite to be true – it eschews the ‘equal treatment’ approach employed in relation to all other ‘grounds’ effectively turning the concept on its head and demanding people are treated differently to achieve equality of results.  Employers, educational institutions and service providers are required to make reasonable adjustments.  Under the Public Sector Equality Duty, public bodies are permitted to treat disabled people ‘more favourably,’  The Independent Living Movement has focused on both barrier removal and on commanding and taking control over resources to secure the support that some individuals require to living independently and to be included in the community.  And the UN Convention on the Rights of Persons with Disabilities also recognises this by focusing on ‘the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.’

Of course we have neither fully achieved equality nor independent living (though we have, as Tom sensibly acknowledged, come a long way). But in my view the challenge rests not with how we have conceived of disability equality.  Rather it the failure of that idea to penetrate deep enough into the the design of public policy and practice and in particular in re-engineering financial and practical support from the benefits system and public services.

And this is where in my view Tom came completely unstuck.  Quoting Pats Petition and Carers Watch he talked of the ‘the elephant in the room’ - the suggestion that progress rests upon acknowledging that some disabled people cannot compete on an equal basis with others in the labour market because of the effects of their impairment or health condition.  Tom argued that Pat’s Petition and Carers Watch had ‘done us a favour’ in asserting this fact, which he implied was a further symptom of social model advocates allowing public policy to ignore individual need.

Putting aside the fact that at every stage in the development of disability rights people have pointed to various elephants in the room (that some disabled children can’t be included in the education system; that some adults with a learning disability can’t living the community; that older disabled people can’t make choices about their own support using direct payments) what I believe Tom – and Pats Petition/Carers Watch – have in fact fallen headlong into is the elephant trap in the room: undermining the promotion of disability equality in employment in order to oppose welfare reform.  

For the sake of any doubt, let me be absolutely clear that I believe many people are being subjected to benefit conditionality and sanctions who should not be, undermining their right to social protection.  I believe this because, as Tom pointed out, the labour market disadvantage faced by disabled people is so profound that to demand of disabled people what the State demands of non-disabled people, without distinction, is morally unjust.  This is especially so given we know that programmes the government has put in place to support disabled people to find jobs are hopeless failures and that discrimination remains commonplace. Fundamentally I disagree with conditionality itself, which I fear is now nothing more that a political device and one which diverts attention way from the real questions of tackling poverty and creating the social and economic conditions and supports to help people secure good jobs.

But the huge tactical error of Pats Petition/Carers Watch and Tom is to collude in reducing this issue to a question solely of the impact of a persons impairment or health condition.  This is in the interests neither of challenging welfare reform or of helping to open up employment to more disabled people.  On the former it gives tacit support to the idea of judging employment potential on the basis of physical and mental functioning alone, with no account given to barriers, job opportunities, skills and the like, thus failing to challenge the assumptions underpinning the WCA which lead to people being subject to unreasonable conditions and sanctions and having their income reduced. On the latter it contributes to the roots of much prejudice faced by disabled people – low expectations – strengthening negative stereotypes through endorsing the essentialist idea that impairments or health conditions predict individual potential.

Tom also urged us to recognise the way the effects of impairments and health conditions can fluctuate and change over the life course, and in particular the need to recognise the effects of ageing.  This is critically important. Yet though he acknowledged that progress has been made on disability rights he didn’t seem to acknowledge how over time the way people with impairments or health conditions interact with the world around them can also develop, either through their own strategies for living or more importantly in this context because of political, economic, social, technological, legal or environmental change.  For example, the employment barriers faced in an economy founded upon manufacturing, demanding physical labour and the operation of machinery are likely to be vastly different from those in an economy dominated by service industries, where greater value is placed on ‘social skills.’

The implication of not recognising this is to suggest that some impairments or health conditions will always make paid employment unrealistic irrespective of the type of work available and hence expecting people with such conditions ever to work is unjust.  Yet it is only very recently that the criteria for out of work disability benefits changed so that people registered as blind were not automatically considered unfit for work.  The functional impact of being blind or partially sighted has not changed.  What has changed is the potential for adjustments and support, especially through developments in information and communications and technology, offering the prospect that labour market disadvantage can be more effectively tackled.

The concept of labour market disadvantage offers a way to reconcile the objectives of promoting employment opportunities and social protection. A more rounded assessment to replace the WCA as proposed by the Labour Party Poverty and Disability Taskforce would take account of relative disadvantage – not just functional ‘limitation’ – in determining benefit entitlement, while at the same time helping to pinpoint the barriers that need to be addressed by an effective employment and disability strategy.

Given Tom’s knowledge of history and the fact that he drew our attention to the death of Connor Sparrowhawk (who drowned having had an epileptic seizure while taking a bath, unattended, in an ‘Assessment and Treatment Unit’ last July), I was surprised that he didn’t query whether the present organisation of Britain’s ‘welfare state’ (which campaigners such as Pats Petition and the Reclaiming Our Futures coalition seem want to defend) actually respected and promoted disability rights.  Tom argued that Connor died because his ‘needs’ were overlooked.  Yet hundreds of millions of pounds of public money are spent on such units precisely to address some conception of individual ‘need.’   In my view what was overlooked were Connor’s human rights – his right to be regarded as equal in dignity and worth, his right to life, his right to be supported in the community, his right to flourish.

To be fair to Tom, he did conclude by pointing to human rights – and to the UN Disability Convention – as a way forward, and expressed disappointment at how little a role human rights play in UK discourse.   But he went on, in response to a question about personalisation, to link personal budgets to a ‘neo-liberal’ agenda, echoing recent interventions by academics such as Peter Beresford, Nick Watson and Colin Barnes all of who appear to have struggled to reconcile human rights with their political beliefs.

It is this failure that in my view is the ‘elephant in the room’ – the fact that our welfare system and public services actually need radical reform to bring them into line with our modern approach to disabled people’s rights, yet the forces ranging against such reform include not only the present government’s austerity measures, the limited imagination of our political parties, public attitudes and ‘producer’ interests, but some prominent disability academics and activists as well.

Disability rights has got stuck.  Sadly I’m afraid this lecture did little to move us on.


















£119 Billion for a pat on the back?

It’s important I think to clarify at the outset of this post my recognition that unpaid support for disabled people will always play a significant role.  But I also believe that we should always be striving to ensure that the role it plays should be one that does not place at risk the right to family life, the rights of children, the rights of disabled people to independent living, people’s health or economic well-being or gender equality. Further still, the role it plays should be in the wider public interest, which means that it must be sustainable.

My view is that currently the levels of unpaid care giving are unsustainable, not in the public interest, breach people’s rights to family life, the rights of children, the right to independent living, people’s health and well being and undermine gender equality.  People in relationships of support – whether labelled ‘carer’ or ‘cared for’ get an extremely raw deal.

And that’s precisely why I believe Carers UK insistence on the tactic of claiming that Carers ‘save’ the State £119 Billion a year, which they argue is a ‘vital message to government and society’ in ensuring the value of carers is recognised is not only largely ineffective in securing meaningful change, but also counterproductive.

In a speech I gave to Carers UK conference in December 2006 (as Head of Policy for the Disability Rights Commission) I questioned whether:

‘the modest gains made on the back of the argument that carers save the state £57 billion a year are in fact a product of the Government’s genuine recognition of the value of what carers do….Or simply an expression of relief that they do it.’

And suggested that:

‘Just as pity for disabled people had unhelpfully shaped responses to them, perhaps gratitude is a similarly harmful response to the situation of unpaid carers?’

It’s a view that I’ve maintained and which I believe has even more prescience given the massive deterioration of the public finances since.

I shall come to the matter of whether the £119 Billion figure stacks up in a moment, but first I want to talk about the framing of this figure as a ‘saving’ and the tactical value in doing so.

Let’s first consider some other facts and figures: the almost 30,000 adults with a learning disability whose sole source of support comes from parents aged 70 and over, many too frail to continue providing support and with no succession plan for when they are no longer around; the quarter of a million children ‘caring’ for their parents; the 1 in 5 unpaid carers at ‘breaking point’; the numbers who leave the security of paid employment and endure poverty as a consequence.   It seems odd to say the least having highlighted these massive costs of over-reliance on unpaid care only to blow them all out of the water by framing unpaid care positively as providing such an enormous ‘saving.’   This is especially so in the context of austerity.  Insofar as the figure is accurate, what it reveals I would argue is not a saving, but an enormous and dangerous level of unsustainable under-investment which is set to become even more exposed over the coming decades as our society ages.

The decision to position carers as ‘saving’ the State money also seems to be intended to contribute to a ‘hero’ narrative – the idea that ‘carers’ do something beyond that which most human’s could endure.  David Cameron sums this narrative up nicely in his statement for National Carers Week ‘Giving up your own time to take care of someone else is one of the most selfless things that anyone can do. Caring can be rewarding, but Britain’s carers make great personal sacrifices to help others, and it’s absolutely right that we should recognise and celebrate the extraordinary work they do.’   Without doubting the considerable personal sacrifice that unpaid care involves for many, this hero narrative is unhelpful on so many fronts.  By seeking validation it fails to challenge the idea that unpaid care is anything other than a positive thing, despite the evidence to the contrary for all parties concerned. It reduces care giving to an act of individual charity.  In doing so it helps ensure that ‘caring’ remains a personal and private matter when it needs urgently to be made a matter of public concern and collective responsibility, just as childcare has gradually become.  It locks carers into a narrative about their own lives which I do not believe accords with their aspirations.  Many do not wish to make the level of sacrifice that they do, but to admit so is to allow the hero mask to slip.  This helps maintain the orientation of public policy towards helping unpaid carers to provide more unpaid care, not towards relieving them of the responsibility with more properly funded social care for those they support, allowing both people involved to establish or re-establish the natural relationship between them: parent and child, husband and wife, partners, friends.    By saying that society would fall apart without unpaid care and claiming that it is worth more than the NHS all discussion of alternatives is shut down altogether.  It can also lead to patronising and vacuous campaigns like this one from Carers Trust highlighting how important a good breakfast is for carers.

Further, this narrative relies on the objectification of those being supported, denying disabled people the equal status that is theirs as a right.  It helps sustain the view that disabled people’s right to independent living is unobtainable and fuels prejudicial attitudes of disabled people only as dependents.  The notion of people making an ‘extraordinary sacrifice’ to provide unpaid care also implies personal tragedy and burden, again undermining the status of disabled people in our society (as evidenced in the choice of words, and outcome perhaps, of this judgement regarding the bedroom tax).

As for the figure itself, what it does not take account of are the costs of unpaid caring – the costs of social security, to the NHS, in terms of household poverty, of lost economic productivity, of inequality for women, of family breakdown – all of which need to be included on the balance sheet before setting out ‘savings.’  It is the identification and communication of these costs which I believe would be far more likely to achieve the sort of public recognition and political pressure that might secure people in relationships of support the policies and resources that they so desperately want, which is in accordance with their rights and which is sustainable for the future.  Only talking about savings further consolidates the idea that care is only a cost rather than a part of our national infrastructure desperately in need of and ripe for investment as we might think of roads, hospitals, schools or childcare.

Sadly however Carers UK seems to be unable to let go of the savings message. And sometime in the near future the figure will be updated and we shall see another enormous leap in the ‘savings’ made to the State by children, people at breaking point, and people too old to support their adult children.   And when we do, whoever is Prime Minister will thank carers for their extraordinary contribution. Very little will actually change just as it hasn’t for much of the time the savings case has been made.

Without a change in the story, I fear things will probably actually get worse.

Carers versus Cared For?

I mentioned this speech which I delivered at a Carers UK conference in 2006 recently during a discussion on Twitter but couldn’t find it on-line.  This evening I stumbled across it and have re-posted it below.  At the heart of the argument is that a false distinction is drawn between carers and cared for and that the (still going on today) tactic of the Carers movement to claim to save the state billions of pounds is counterproductive for all involved.

6th December 2006, Royal College of Nursing



I’d like to begin by thanking Carers UK for inviting the DRC to address today’s conference.

You were supposed to be hearing from Gerry Zarb.

Gerry sends his apologies.

He is a member of the DWP’s Independent Living Review and they scheduled a key meeting today with the Minister for Disabled People and Minister for Care Services so he asked if I could step in.

And I have to tell you it was only after I agreed that I learnt that the issue Carers UK wanted us to address was ‘carers vs cared for’.

Gerry claims not to have known this.

Come to think of it I haven’t double checked that there is actually a meeting of the Review today….

…But it’s too late now!

So carers vs cared for…

..I could use this platform to start a phoney war.

It might be a good way to get some headlines:

‘Disability watchdog attacks carers lobby for oppressing disabled people’

And of course there are some in the disability lobby who would applaud me for saying that.

Who consider that lines have been drawn and who refuse to enter into dialogue with the ‘enemy’.

That is not the position of the DRC.

At the DRC we recognise that there is a critical difference between working to advance human rights and equality for all, and simply seeking to secure your own rights and opportunities at the expense of others.

We recognise that many carers are themselves disabled people, and that the life chances of disabled people will not be improved by impeding or failing to improve the life chances of those with who they share their lives.

We recognise that the pot would be calling the kettle black to berate government and public authorities for their failure to adopt a joined-up approach to public policy and services and then fail to do so ourselves.

So let me be absolutely clear before I go on:

The DRC believes that carers should anticipate an equal level of access to dignity and respect, freedom and opportunity as those who require support and assistance in their lives.

Carers and people who are disabled or have long term heath conditions share the same goal of securing choice and opportunity.

The DRC also believes many of the barriers faced are the same, and that while there may appear to be competing claims to recognition, power and resources, in reality the solution is the same.

It is on the task overcoming these barriers and securing this solution that I am going to focus today.

The DRC’s position on the rights and opportunities of carers

 I want to start by setting out what DRC believes is required to advance the rights and opportunities of carers.

And I do so not simply because it seems politic.

But because we recognise that if there is a division between carers and cared for, most often it isn’t along the lines of disabled and non-disabled people.

Many people with mental health problems, for example, offer support at times of crisis to friends experiencing the same thing.

For example, very recently I was on the tube and I noticed an older  couple being helped off the train by their daughter who had Downs Syndrome. There are 70,000 adults with a learning disability who live with parents aged over 70.

Discussion on that issue tends to centre on the support parents provide to their children.  I suspect that in reality it is much more of a two-way street.

Many older carers have impairments and health conditions.

And for the most part in this discussion we are talking about the well-being of whole families, not just individuals.

Public policy must strengthen the capacity of families to function in  a way that improves the life chances of all their members.

Disabled people’s life chances will not be improved if we do not improve the life chances of those with whom they share their lives.

How can we do that?

Well, first the DRC believes that caring responsibilities should be y recognised in future anti-discrimination law as a specific ground, a belief we share with Carers UK and the Equal Opportunities Commission.

A single equality act must generate a better balance between  work and family life  by  widening opportunities for people to improve their social and economic well-being.

This is crucial to secure the prosperity and economic growth Britain needs in the face of rapid demographic and world economic change.

To support this aim DRC is also  funding  a discrimination case which will test whether cases of disability discrimination can be brought by non-disabled people on grounds of their association with a person who is disabled – in this case the mother of a disabled child who believes she has been treated less favourably by her employer.

We also believe there should be stronger rights to flexible working.

In time we believe rights to flexible working should be available to everyone.

In the short term we believe existing rights to request flexible working should be strengthened by making them available from the point of recruitment rather than six months into a job and by requiring employers not to unreasonably withhold consent to such requests.

Finally, and this is what I am going to focus the rest of my remarks on today, we believe that carers could benefit considerably from major reform and investment in our social care system.

As many of you will be aware, the DRC has worked closely on this issue of reform and investment with Carers UK and the Equal Opportunities Commission, both of which have supported Lord Ashley’s Independent Living Bill which the DRC helped write.

And to go back to the title of this speech, this is the area where perhaps the most difficult challenges lie and where historic divisions have kept those lobbying on behalf of disabled people and of disabled people apart.

From objects to citizens

I think it might be useful at this point for me to say something more about the position of some disability activists and why they have seen the interests of carers and disabled people in opposition.

The pioneers of the disability movement in the 1960’s and 1970’s including people living in institutions who had no choice about being there and no choice about what they ate, who they saw, what they did when they went to bed.

In some cases, the people who made that choice for them were their parents and they had no power to disagree or decide for themselves, even as adults.

Others lived outside residential care but not in their own home.  They were unable to move out of the home of their parents or foster parents and again found themselves subject to their parents decisions.

These activists began to publicly reject the very notion of being ‘cared for’ because they believed that kindly sounding phrase was being used as cover for their incarceration, and the complete denial of respect, dignity and choice.

For the advocates of what later came to be called independent living the set of functions and activities we tend to call ‘care’ had become an end in themselves, and that end was mere containment.

Carers, whether members of their family or paid for by the state, were often viewed as oppressors.

As such, campaigns for greater recognition, rights and status for the function of ‘care-giving’, where they did not simultaneously try to secure rights to independent living for disabled people were viewed as part of the problem.

It can be argued that such campaigns actually stand in the way of disabled people securing full citizenship which hard-pressed carers  themselves – through no fault of their own I hasten to add – are unable to guarantee with the current social care settlement.

Many  felt the Mental Capacity Act was a positive development, which clarified disabled people’s rights to self-determination.  .  Others consider it  oppressive rather than liberating, primarily because it lacks rights to independent advocacy which would put greater control into disabled people’s hands.

I have given an extreme account of how some disabled people have viewed carers as in direct competition for rights and resources.   I should say that the DRC’s Learning Disability Action Group overwhelmingly view family carers as strong allies and facilitators of their rights.

It is important to consider the power balance in some caring relationships which may not bear the hallmarks of oppression as the more extreme cases and may not be all that common.

Yet some people do feel that they have little control or power than to do anything but accept the bear minimum offered to them.  For example, I learned recently of someone whose neighbour received Carers Allowance to provide support to her and yet she was not happy with the support she received – what was she able to do about this?

We believe where discord exists it is a product of the settlement we currently have – the current system is so limited and rights and entitlements so threadbare that different groups are forced to fight their own corners to compete for attention and resources.

Much of public policy as far as disabled people are concerned remains founded upon notions of care, welfare and charity rather than rights, opportunity and citizenship.

We have had over a decade of developments in disability discrimination legislation – an acceptance that disability is a social rather than medical challenge.

Yet our welfare state – from the benefits system through to social care – remains stubbornly rooted in an approach which undermines rather than aids the progress towards equality.

Support where it exists too often fosters dependency and does little to aid well-being.

For many it doesn’t exist at all.

In England for example almost 70 per cent of local authorities social services only deliver any support at all to those with the very highest levels of need.

The Commission for Social Care Inspection has just reported that 3 local authorities are now only providing services to those deemed to be in ‘critical’ need – with more authorities seeking to do the same.

Since 1994 the proportion of older people receiving home care has almost halved as resources are focused on those with the highest levels of need.

Clearly this isn’t just the concern of disability activists.

This situation creates a huge reservoir of unmet need.

And just as public policy on social care rests on outmoded assumptions concerning the place of disabled people in society so it also rests on increasingly outmoded assumptions about the capacity and willingness of others to fill the gaps

And it is here I believe that the interests of the cared for and the carers really collide.

Millions families and individuals are often struggling to provide support at great expense to their well-being for millions of others who would choose something else were it available

Were there an alternative, I believe we would all welcome it. .

A democratic mandate for change?

Earlier this year, the DRC, Carers UK and the Equal Opportunities Commission and Carers UK commissioned a survey of the British public’s attitudes and expectations of social care.

It found that people have high expectations of the support available should they become disabled.

90 per cent want to be supported to stay at home; 83 per cent want support to visit family/friends; and 78 per cent want support to take part in local activities.

Women are still expected to provide more support than men; but a third of both women and men say they are unwilling or unable to provide informal support now – or in the future.

I think most of us here know enough to know that those expectations could not be met within the current system.

But there is an appetite for change.  Those polled were willing to pay higher taxes for better social care by a ratio of 2:1.

Amongst higher earners there was even greater support.

In our ageing society I believe the question of ‘who cares?’ is one of the big three alongside environmental and security concerns for any political party looking for electoral success.

The chance for us now is to work out what it is we want, and to develop a new and compelling case for achieving it.

And I believe by coming together we have the capacity to provide both a new account of the shared costs we face and to chart the potential shared benefits for carers, the cared for and the whole of British society of a new settlement on social care.

The costs of inequality

So what is the cost we face and why is it important to define it?

The shared cost is disadvantage and inequality.

And this costs not just the individuals and families concerned, but society at large.

It is critical that we define these costs in this way, because otherwise the change and investment we seek is not viewed as a solution, but just another problem to add to the pile.

The cost includes the poverty which blights the lives of disabled people and those with who they share their lives.

There are twice as many disabled adults in poverty than non disabled adults.

One in three children in poverty has a disabled parent.

Amongst Bangladeshi families where there is a disabled parent the risk of child poverty is 83% compared to 36% in white families.

Many carers live in poverty, including many women who spend their retirement impoverished because they have provided unpaid care earlier in life, often not by choice but because statutory services were not available.

Many rely on benefits as their primary source of income.

This continues to have a marked impact upon gender equality, most keenly felt in relation to incomes in retirement, but also in respect of pay and advancement during women’s careers.

Many mothers and carers work part time for low pay – they cannot find higher productivity work that they can combine with family responsibilities.

Around half of all people paid less than £6.50 an hour are women who work part-time.

Nearly 4 in 10 carers providing 50 hours of support or more a week have never worked or are currently unemployed.

A recent report by the charity Barnardoes calculates that there are 175,000 young people – many between the ages of 13-15 providing substantial levels of care to their parents or other family members.

Their social and academic development suffers as does their health.

To allow this situation to continue strikes us as indefensible.

Adults caring 50 hours or more a week are twice as likely to be in poor health than those not.

Many young carers develop mental health problems – and it should be noted that of all new claims for Incapacity Benefit, mental health as the primary reason has risen from 1/5 of new claims in 1997 to 1/3 in 2005.

The cost of residential care has risen steeply in recent years, partly in response to rising expectations and standards.

For example in Scotland the average weekly cost of residential care for people with a learning disability rose by £100 between 2003 and 2005.

And the availability of home care has, as I said earlier diminished considerably.

Of course, alongside the impact on carers’ work opportunities, the way that social services support is, or rather often isn’t, offered means that no paid work is possible for the person requiring support.

As a consequence, the situation we find ourselves in impedes prosperity and economic growth.

And we know, as our society ages,many more will be in a similar situation without radical change.

And how do carers feel about their lot?

Well according to Princes Royal Trust for Carers over half have felt like walking away from being a carer.  A recent survey found that:

71% of carers said they were stressed

83% of carers are frustrated by their caring role

More than half feel overwhelmed, angry, depressed and taken for granted

4 in 10 carers feel they never had a choice in deciding to care

About a third feel sad about the loss of the previous relationship they had with the person they now care for

It is clear to me that disabled people are carers have a common interest in turning this situation around.

It is also clear to me that together we can make a powerful and compelling case for investment and reform.

Escaping the black hole

But first there is something we have to deal with.

I have just spent 5 minutes charting the enormous costs to individuals, families, society and the economy of maintaining the existing status quo with the hope that we can begin to build a new case for investment in adult social care.

But chances are this will all be drowned out.


Because the Carers lobby has inadvertently created a huge black hole at the centre of this policy galaxy.

And what is this black hole?

It is the argument that carers provide a service free of charge of the same, if not greater, financial value as the NHS.

An argument raised to gain recognition and secure access to resources.

An argument that has played a part in securing rights to flexible working, tax credits, assessments and in relation to pensions.

As a political tool we can admire it, but equally it is an argument which says two things to any Government:

First, don’t ever seek to replace what carers do with statutory services – an utterly unaffordable option.

Rather, make it a bit easier for them to do and seek to lessen the impact

Second, their voice is politically more important than the people requiring the support and so it is around them that we should build policy.

Both outcomes of course undermine the campaign for investment in independent living services to which I referred earlier.

I am also unconvinced the savings argument is helping to achieve what carers really want.

In preparing this talk today I Googled the words ‘childcare and public investment’ and I got about 10 pages of links.

Was it the financial value of the childcare parents provided which won the case for investment in childcare?

Was it the fear that parents might walk away from their responsibilities?

No – investment in childcare came to be seen as a politically attractive investment because the case was made that it would  widen opportunities for parents and in particular mothers to work, reduce the benefits bill, improve the life chances of children,  alleviate child poverty, extend prosperity and promote economic growth.

What’s more, it would be popular amongst important sections of the electorate – and in particular women.

What had traditionally been seen as a private family matter became a major issue for public policy.

In short – the costs of the status quo were spelt out and the argument in favour of public investment won the day.

That is how Harriet Harman and others managed to secure the commitment of the Chancellor – once understood in this way he couldn’t get enough of it.

I then Googled the phrase ‘adult social care and public investment’.

And I got nothing.

Adult social care is not, unlike childcare, regarded as an   investment.

It is seen as deadweight expenditure – a cost and nothing much else – no real outcomes are foreseen and no real value is attached to it.

This brings into question whether the modest gains made on the back of the argument that carers save the state £57 billion a year are in fact a product of the Government’s genuine recognition of the value of what carers do….

….Or simply an expression of relief that they do it.

Just as pity for disabled people had unhelpfully shaped responses to them, perhaps gratitude is a similarly harmful response to the situation of unpaid carers?

A new model for social care in a 21st Century welfare state?

So, if we share an interest in reform and investment in social care, are we are able to come together to make a new case for  change?

And how might this look?

The DRC believes social care needs to be re-modelled around the principles of independent living.

The primary measures of success would be the choice, control and participation both those requiring support and those with whom they share their lives were able to achieve.

The Independent Living Bill which the DRC helped Lord Ashley to write safeguards to ensure that decisions made about support for disabled people should not be to the detriment of other family members or carers.

The DRC believes there should be minimum outcomes, at least equivalent to those for children under the Every Child Matters outcomes.

We believe government – national and local – should be required to produce strategies demonstrating how they will promote independent living and meet these outcomes.

We seek to extend choice and control through expanding access to independent advocacy, introducing self-directed assessment and promoting a navigator model for social work.

The degree to which choices are met should be a core area of local authority performance measurement.

So should measuring the degree of control people have and how easy they find it to take part in family, social and economic life – as parents, active citizens, workers, consumers.

We support individual budgets and want more such initiatives to help people assume greater control and gain greater flexibility in the services they use.

We believe people moving from one part of the country to another should be guaranteed their support package in the area they move to, at least for a fixed period before re-assessment.

We believe families should be offered mediation where disagreements emerge between members.

For example where a person is refusing an assessment to accept support from anyone other than a family member who is unable or unwilling to do so.

This is a clause in the Independent Living Bill which was developed by the DRC with Carers UK.

That is the model we seek and we believe it chimes with the vision politicians of all colours are beginning to chart out for a 21st century welfare state.  One which:

Delivers dignity and respect

Is Empowering

Extends choice and control and fosters independence

Expands opportunities for people to work when they can and or to play an active part in the life of their communities

Improves health and well-being

Invests to save – for example by preventing poor health, welfare dependency or admission to residential care

Is ‘joined up’

Provides value for money

And contributes to economic growth and widening prosperity

I believe we can together make a case as powerful if not more so than the one that has secured childcare as the ‘new frontier of the welfare state’.

Carrying forward the debate

I expect some of the things I have said today you may  have found challenging.

I expect there are things I said today for which there are equally powerful counter-arguments.

Whatever you have thought, I am still glad I have had the opportunity to have this dialogue with you, and I hope it will develop and continue through the remaining life of the Disability Rights Commission and into the life of the new Commission for Equality and Human Rights.

We stand to gain far more from talking than from not doing.

And I would like to set a particular challenge today for the new Equality 2025 advisory group of disabled people to be announced by the Minister for Disabled People Anne McGuire tomorrow.

This group has been set up to assist Government with the process of expanding disabled peoples life chances by providing advice through the new Office of Disability Issues.

It is a powerful expression of the principle ‘nothing about us without us’ – of the direct involvement of disabled people, absent for so long, in policy making.

My challenge for that group is that it joins this debate, recognises that there need be no conflict between the interests of carers and those requiring support – between disabled people and the family and friends who support them.


 Before I close  I want to show you a short film produced by the DRC as part of our ‘Are we taking the dis?’ campaign.

It ran in cinemas earlier this year.

Link to the ‘Shopping’ film

That film is based on a real case which came to the DRC’s attention last year of a couple who were forced apart when the husband was no longer able to provide the support his wife required and social services were unwilling to support in the place they wished: their own home.  They both suffered as a consequence. He fought and won and they are now back together

The reason I wanted to show you that, is because we musn’t ever forget that fundamentally this debate is really about people and relationships.

It is about the shifting nature of interdependencies which exist in families at different points throughout life.

Between mothers and daughters, daughters and mothers, wives and husbands, husbands and wives, sons and fathers, fathers and sons, brothers and sisters.

…Between us and those with whom we share our lives.

…and that includes disabled adults who have received support  throughout most of their lives who become givers of care as their parents age, they have children of their own of friends that they help.

One day the question of ‘who cares?’ affects us all.

And we have somehow to harness that fact and use it to build popular support for reform and investment in public services that promote the dignity, well-being, and independence of everyone  involved.

Which recognises that this is not a matter of ‘carers’ or ‘cared for’.

It is about all of us, whatever side of the coin we find ourselves on.

The investment and reform I have proposed today is an investment in all our lives.

I hope we can work together to turn these ideas into reality.

Thank you.

Some questions for the Equality and Human Rights Commission

On the whole, this looks like is a was a reasonably good session for the Chair and Chief Executive of the Equality and Human Rights Commission (at which I was previously a Director before leaving in June 2011) before the Joint Parliamentary Committee on Human Rights.

As the Committee says it will be writing to the Commission with follow up questions I thought I might recommend some issues on which to probe a little deeper:

1. In response to a question from Lord Lester of Herne Hill regarding the use of the Commission’s judicial review powers, Chief Executive Mark Hammond responded ‘We have no wish, as the chair and board have stressed to us in the past
year, to be acting as some sort of organisation that has a lobbying agenda. As I have said to staff quite a lot over recent months, it is not that we have an agenda and use the law to pursue it, our agenda is the law’

This is of course technically correct, but it should be stressed that Parliament voted last year to maintain the Commission’s General Duty at Section 3 of the Equality Act 2006 and this is the law which must form the Commission’s agenda:

The Commission shall exercise its functions under this Part with a view to encouraging and supporting the development of a society in which—

(a)people’s ability to achieve their potential is not limited by prejudice or discrimination,

(b)there is respect for and protection of each individual’s human rights,

(c)there is respect for the dignity and worth of each individual,

(d)each individual has an equal opportunity to participate in society, and

(e)there is mutual respect between groups based on understanding and valuing of diversity and on shared respect for equality and human rights.

The law thus clearly positions the Commission as an agent of social change, not merely a body tasked with enforcing equality and human rights law, and requires that it should direct its efforts – including when promoting and enforcing equality and human rights law – to these ends.  It also provides the Commission with considerable scope to engage with a range of issues, including for example the conduct of elections given their potential to impact on the development of such a society

2. The Committee asked about the Framework Agreement between the Commission and the processes by which the Commission’s budget is agreed.  As I wrote on this blog earlier this year, there remains it seems far too much scope for government to deny the Commission budget based upon its own political aims rather than a transparent and objective assessment of value for money, especially given programme spend is agreed on a project by project basis.  This has meant for example that the Commission’s bid for programme money to support civil society to engage in UN human rights treaty monitoring was declined.   It is difficult to see how this mechanism for agreeing budgets is compliant with the Paris Principles given government could for example decline a request on the part of the Commission to undertake a programme of work to meet its duty under s9 of the Equality Act 2006 to promote understanding of the importance of the Human Rights Act 1998 and the European Convention on Human Rights.

3. The Committee asked about the media and human rights, noting the high levels of myths and misreporting and asking what action the Commission had or planned to take to address this.  This is a perfectly reasonable question given the Commission has core duties under s9 of the Equality Act 2009 to ‘promote understanding of the importance of human rights’ and to ‘promote awareness, understanding and protection of human rights’ (‘Human rights’ in this context refers to ‘the Convention rights within the meaning given by section 1 of the Human Rights Act 1998, and other human rights’).  While I personally agree with Baroness O’Neill’s position that simply seeking to correct journalists is likely to be a fruitless – and quite probably counterproductive task – neither she nor the Chief Executive offered any indication as to how the Commission did plan to discharge its core duties under s9 other than vague reference to a communications strategy.  Given it is highly probable that during the next 12 months the Conservative Party will, with strong support from parts of the Press, announce its plans to repeal the Human Rights Act and potentially withdraw the UK from the European Convention on Human Rights, most likely via a concerted campaign to incite public antipathy towards human rights, it seems highly remiss of the Commission – and perhaps a sign of its weakness and lack of independence – to have not prioritised its duties in this regard.






Extraordinary Transition

In Britain today a growing number of people are separated from their families, often to isolated places hundreds of miles away from home, where they are forced to live indeterminately without hope of release, subject to behavioural regimes which deny and seek to subdue their personality and preferences, where they are drugged to submission and as we now know at great risk of physical and psychological abuse and neglect.  Some have died. Many of those that are fortunate to escape do not recover fully from the scarring of their experience, sometimes giving rise to the type of behaviours which were originally used to justify their being stripped of their liberty, creating a vicious cycle.

The human rights abuses to which I refer are not in the name of Britain’s fight against terrorism. This is how 21st Century Britain treats people with learning disabilities and autism who exhibit behaviours which have been labelled ‘challenging.’

Following the 2011 BBC Panorama expose of the torture by staff of those confined to living in one such establishment (the Winterbourne View hospital in Bristol) the government in 2012 committed to ensure that ‘all current placements will be reviewed by 1 June 2013, and everyone inappropriately in hospital will move to community-based support as quickly as possible, and no later than 1 June 2014.’ Yet in the first quarter of 2014 there were more inpatients in such settings than in 2011, a situation described by Care Minister Norman Lamb MP as ‘an abject failure.’

In response to the most recent appalling case to come to light involving a man called Thomas from Bradford, Director of Nursing for Bradford City Care Trust Nicola Lees had the following to say:  “We understand that transition into another care setting can be distressing for all involved and our staff are trained to advise on the support families can access.”

In the shady world of anti-terrorism, state sanctioned kidnapping of terror suspects – often to places of interrogation and torture – has been recast as ‘extraordinary rendition.’   In Britain today over 3000 people with learning disabilities and/or autism are the victims of ‘extraordinary transition.’

And it must stop.  Without any more excuses. Now.

(for a brilliant but deeply disturbing insight into the world of ‘Assessment and Treatment Units’ read Mark Neary’s series ‘107 Stories from the Assessment and Treatment Unit‘ which he is writing as a contribution to the Justice for LB campaign, which concerns the death of 18 year old Connor Sparrowhawk, who drowned in the bath while in the ‘care’ of an ATU in July of last year)

Why ‘desperation porn’ is not the answer to ‘inspiration porn’

Lots has been written lately regarding the phenomenon of ‘inspiration porn’ – images of disabled adults or children doing perfectly ordinary things allied to slogans aimed at non-disabled people encouraging them not to ‘give up’ or to ‘try harder’ – the message being ‘if disabled people can manage to do anything at all then what excuse do non-disabled people have for not achieving in life?’  It has been suggested that the UK Government’s ‘Disability Confident’ programme relies on this approach not only to influence employers but to ‘inspire’ disabled people as well.  The Disability Confident twitter account reports how images or stories of disabled people doing that most ordinary of things – holding down a job – are described by Ministers and business-people as having ‘inspired them’.  The problem of course is that it unintentionally risks re-enforcing the very thing it believes it is designed to overcome – low expectations – by regarding what should be considered quite ordinary as exceptional.   For more on this I recommend this piece by David Gillon on the matter.

I think though that there is another equally well-intentioned but unhelpful phenomenon that has emerged in recent years which for the sake of this post I’m going to call ‘desperation porn’.  This is where campaigners – perhaps feeling themselves to have exhausted avenues which might allow more moderate narratives and accounts – come to describe or assign status to situations facing disabled people using the most grave and serious labels: inhuman and degrading treatment, hate crime, hate speech, crimes against humanity and so on – which the situations, however damaging, do not merit.  Or where in pleading a particular cause, such as in relation to getting rid of the deeply problematic work capability assessment, campaigners place greatest emphasis on those who have died having recently gone through an assessment which judged them capable of work  or who are alleged to have committed suicide on threat of having their income reduced.

Of course we know that hate crime does happen to disabled people, that some disabled people are subject to inhuman and degrading treatment, that people have died shortly after being deemed capable of work and that no doubt some people have taken their lives as a consequence of being told they will lose income, services or their home.  None of this is disputed, nor should we shy away from ensuring these stories are heard. But thankfully most disabled people are not victims of hate crime.  Relatively few people are subject to inhuman or degrading treatment.  Most people don’t die or take their own lives having gone through a benefit assessment.  And it is an extremely long shot to suggest that this government’s welfare reforms enjoy equivalence with ‘crimes against humanity’ such as genocide, systematic rape and disappearances,

The assumption appears to be that only by painting such a serious and desperate picture will the media, public and politicians wake up to the gravity of the situation and begin to challenge it.   I fear the precise opposite is true and that this outbreak of ‘desperation porn’ is – like its opposite number inspiration porn – likely to do much more harm than good.   My reasoning is threefold:

1. Legal concepts such as hate crime, hate speech, inhuman and degrading treatment or crimes against humanity have very specific meaning and/or incredibly high thresholds of seriousness and extremity.  This means that at most only a slither of what disabled people are experiencing as a consequence of austerity would come even near to ‘making the grade’.  Using such terms to describe situations that do not meet this threshold risks trivialising those situations that do, while at the same time meaning others can be regarded as less serious and lacking significance, which of course dismisses the negative experiences of the vast majority of people affected.   Likewise placing so much emphasis on deaths and suicides linked to welfare reform downplays other negative experiences – of material hardship, of being subject to coercive yet useless regimes of so called employment support, of fearing the next official letter through the door – which are making life a misery for thousands.

2. Just as the fear of crime far outweighs the actuality, while still being able to damage lives, so ‘desperation porn’ holds the potential to cause fear, depress expectations and may be equally culpable in leading people into mental health problems and towards contemplating suicide. People should consider the negative impact of their own frames and narratives when promoting the idea that disabled people as a whole are hated, are ‘under attack’, that ‘disablist violence’ is an ever present threat and that the government is waging genocide.  Isn’t this just the same ‘politics of fear’ that the government stands accused of?  Does this help us achieve the change we seek or does it in fact contribute towards making matters worse by extinguishing hope?

3.  And finally, ‘desperation porn’ refuses to accept progress by failing to recognise that what can seem or look bad can sometimes be an expression of things actually getting better.  When reported disability hate crime rises by one third (against a backdrop of no rise in overall estimated incidence in the last 7 years) it is most likely a sign of improvement in people’s refusal to accept such treatment, in their confidence to report it and in the response of the police and other agencies. Where people complain about inaccessible public transport or goods and services it is in part because disabled people are both traveling and going out more and are more empowered consumers with higher expectations.  And where the general public (including let’s not forget many disabled people) extend their intolerance of people being on unemployment benefits to disabled people, is this merely a sign of coarsening attitudes, or does it reflect rising expectations that disabled people should be in work and not be excluded from the labour market?  Of course ‘getting better’ does not mean solved and we should continue to angry at hate crime, inaccessibility and discrimination.  But characterising evidence of progress as deeper failure only acts to misdirect energies and it causes disabled people and their organisations to be viewed as talking from a position of weakness when in fact they have demonstrated great strength in bringing about positive change.

Of course these are bleak times, and injustices – including extreme injustices – must be highlighted and tackled.  But hope always rises through the cracks and it is hope that leads to real change.  In these difficult times it is all the more important to ‘make hope possible rather than despair convincing’.  While we certainly need to challenge and banish counterproductive ‘inspiration porn’, we also need to be very wary of its opposite number ‘desperation porn’ taking root.




Blogging against ‘disablism’

The Blogging Against Disablism Day is a fantastic initiative, to which I contribute this blog, which should not be misconstrued as a criticism of the initiative itself.

I’ve never though been a fan of the word ‘disablism.’  To talk about ‘disability’ in the same way as race assigns it the same status – an intrinsic personal characteristic which itself the object of discrimination.  To have equivalence with say racism or homophobia it should technically be impairmentism, for it is impairment that is the relevant ‘personal characteristic’ and impairment-related prejudice disables, in the same way other socially constructed barriers disable.

This is important because it is my contention is that the prejudice and discrimination that disabled people face all stems from one specific viewpoint – one which is deeply embedded in our and other society’s value- systems, our everyday practices and our institutions – that an impairment or long term health condition is de-facto a deficit.

So embedded is this idea that it forms the criteria by which people are judged to be eligible for benefits or social care.  The deserving disabled person is he or she who is considered to have no agency or potential for productive life.  To not be in deficit is to not be considered eligible. To manage to strive off the back of such support is to be a scrounger.

It is there in the way social care and criminal justice both describe individuals and groups with impairments or health conditions as ‘vulnerable’ – as though inviting harm upon themselves – or ‘hard to reach’ as though deliberately in hiding – not as people in vulnerable situations because of the failure of public institutions to reach them.

It is there in the presumptions of medical professionals in life and death decision making at the beginning, end and throughout the lives of people with impairments or health conditions that their lives are less worth saving.

It is there in the continued insistence on describing some children as having ‘special educational needs’ rather than schools as having failed to include them.

It is there in the operation of laws which strip people of the right to make decisions about their own lives on grounds of mental capacity rather than supporting them to do so, in the practice of warehousing people in institutions large or small which rob people of their identity and personhood, and in the neglect, inhuman and degrading treatment which people with impairments and health conditions continue to be subjected.

This idea of impairment as de facto deficit was also clearly present in the media coverage of the the killing of three children by their mother last week.  Within hours of discovering the children had Spinal Muscular Atrophy the media were scrambling to make sense of their deaths by asking questions openly regarding their life expectancy, or the demands placed on the mother in caring for them – their perceived deficits providing justification for their killing.

The notion that disability equals deficit embodies the idea that disabled people are less than human.  And to be less than human provides the justification to be denied equal human rights.

The things I’ve described above are no doubt what others regard as ‘disablist’.  But I believe we can’t afford to allow ourselves to use the concepts of disability and impairment interchangeably in this way. By doing so we blur what we have fought so hard to convey as the meaning of disability – as socially constructed barriers – and by doing so undermine our ability to challenge the idea that while there are many deficits, these are not borne of a persons body or mind, but of the society in which we live and which we can and must continue to change for the better.