Why it’s time to change the way we tell the story of people with learning disabilities

Marking the anniversary of the BBC Panorama exposé of inhuman and degrading treatment at Winterboure View there has been much commentary this week concerning the lack of progress on respect for the human rights of people with learning disabilities. This has centered not only on the slow transition from ‘assessment and treatment units’ to community based living, but also the recent ‘LeDeR’ report into unexpected deaths and its shocking update on the gap in life expectancy between people with learning disabilities and the wider population (29 years for women and 21 years for men).

Writing in the Guardian (Seven years on from Winterbourne View – why has nothing changed?), Saba Salman ventured that ‘For all the talk of learning lessons, the biggest one of all is that if you want a national scandal to go unnoticed, make sure it involves someone with a learning disability’ and many people appeared to endorse this line, tweeting it and linking to both Saba and Alicia Wood’s articles.   I was pleased to see Sara Ryan challenge it though, noting how ‘I think there is some change afoot. The #leder review wasn’t buried as planned, inquests/hearings are now being live-tweeted. We are shining a light…’ I think this actually underestimates the change: despite NHS England’s best efforts, the LeDeR review was the second headline story across the whole of local elections results day on BBC news, from BBC Breakfast, through to the 1, 6 and 10 bulletins and the news channels, as well as radio and online, meaning tens of millions will have learned about its findings. The Inquests into Connor Sparrowhawk and Richard Hadley enjoyed similar coverage. It is simply counterfactual to suggest that such scandals are going ‘unnoticed’.   The truth is that as a result of the engagement of journalists and the amplification of social media – not least the Justice for LB campaign –  they have a higher profile than ever before.

Yet it does often feel as though for all of this profile and focus, real change continues to be elusive. There are no doubt many reasons for this: a lack of political leadership, the impact of spending cuts, the ‘liability culture’ that has infected health and social care and creates perverse action, the fact that sustainable change takes time to implement. But I want to recommend we consider something else: the impact of the way the issues are being framed and communicated by those of us who want change to come.

How could it be that such unprecedented media coverage of such outrageous injustice isn’t obviously translating into tangible public demand and political support for change? Well, one hypothesis is that the way the story is being told is devoid of any sense that it can be solved, and so the bigger the story becomes the greater people are left with a sense of fatalism rather than possibility.   Further, the way the issues have been communicated have focused on individual cases and have failed to point people to the systemic causes: to the things that need to be fixed.   By allowing the story to be told in this way, we actually weaken its impact on those with responsibility to enact change.

These are not framing challenges unique to these issues, but are commonplace and the current focus of efforts by organisations such as Joseph Rowntree Foundation in its work to reframe poverty, and Crisis in changing the narrative on homelessness.

This is not a call to sweep negative stories under the carpet. Rather, as Sir Bert Massie once said ‘only high expectations shine a light on injustice.’ Hope is preferable to despair as a lever for change. As Thomas Coombes points out:

‘Fear and threat trigger primordial base defensive instincts in the brain, which leads to defensive political impulses. Safety and calm however, encourage the upper parts of the brain, generating more empathy and welcoming political instincts.’

To these ends, I was struck by the Red Cross’s recent campaign for First Aid to be part of the formal school curriculum. Their campaign message was ‘By making first aid compulsory on the school curriculum, we can empower young people to save a life.’   The campaign aims to fix a major problem, which is that the majority of us have no idea how to administer first aid in an emergency, which means people die avoidably. If the Red Cross were to emulate our communications on people with learning disabilities the campaign message would be ‘people are dying because most of us don’t know how to save them’. Which of these two messages motivates you to think that something can and must be done?

The lesson here is to ‘dial up’ the solutions and dial down the sense of crisis. So for example, in telling the story of insufficient progress towards people moving from ATUs into the community, start with stories of success or possibility, not failure. Or when it comes to health inequalities, show the difference good practice makes in improving health and life expectancy, don’t just present the overall gap. Doing so does not diminish the sense of injustice involved, it reinforces it by showing that those with responsibilities are failing to do the things they could do, with the result that insufficient progress is being made, or that people’s life expectancy is cut vastly short.   A lesson should also be learned from the campaigns for Equal Marriage and ‘Repeal the Eighth’ in Ireland: don’t focus your message on the people that oppose you, but on your growing support.  Noone wants to join the losing team.  Tell stories of how people have realised there is a better way, the journey they’ve been on, the improvements they’ve made and the dividends to them and society.  This is about making what we want to see appear to be the new normal, not the exception. We need to stop saying noone notices and noone cares.

This leads us to the individual versus systemic issue. Individual stories – not just of the people directly affected, but of those with who they share their lives – are powerful, but at the same time if told in certain ways can give the impression that they are just that: individual, tragic stories. That means that the systemic factors lying behind them go untold. We need instead to tell a ‘thematic story’, pointing first to the systemic causes of inequality, or rights violations, with individual case studies used to illustrate it and bring it to life.  This places the focus squarely on the things that those in charge are responsibility for and that can be changed.

What I say here is not a ‘silver bullet’. I do think there is apathy about the lives of people with learning disabilities, underscored by prejudice and low expectations, which also need to be challenged proactively and in evidence based ways, including via strategic communications.   But at the same time, by ensuring focus on the systemic causes of the problems faced, by dialling up solutions and by telling stories of positive change we can harness the vast amount of notice these injustices do now attract and win more change as a result.

Here are some helpful reflections from the Frameworks Institute on how to talk about disability and human rights

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Advertisements

Mind the gap

Yesterday, the disability charity Scope published findings on  attitudes, awareness and opinion among disabled and non-disabled people concerning disability in Britain today.   The report focuses on the ‘gaps’ in perception between what non-disabled people think or believe and either facts or the perceptions of disabled respondents.   So for example, where their polling found 1 in 3 disabled people regard there to be a ‘a lot of prejudice’ towards disabled people, among non-disabled people the figure is 1 in 5. The report, and Scope’s communications around it, have also emphasised how 66% of people underestimate the prevalence of disability in the UK.

The report includes some useful insight into the nature of prejudice towards disabled people, confirming a previous finding that seemingly benevolent attitudes may mask prejudice: 75% of people surveyed some or most of the time think of disabled people as ‘needing to be cared for’ while 32% regard disabled people as ‘less productive’.  Though in both instances these may not necessarily always point to negative or unhelpful attitudes, such findings do arguably support the direction given in Article 8 of the UN Convention on the Rights of Persons with Disabilities to ‘promote awareness of the capabilities and contributions of persons with disabilities.’

It also helpfully points to ‘contact theory’ – the idea that prejudice is most effectively tackled through people coming to know one another – and the potential of strategies to increase social interaction between disabled and non disabled people, noting that ‘Just 17 percent of those who don’t know a disabled person think there is a lot of prejudice against disabled people. This compares to 37 percent of respondents who have a disabled friend they know fairly well.’

Such research into attitudes is vital and it is welcome that Scope continues to carry it out. However, I felt the report was weakened by a tendency to draw conclusions that are not obviously supported by the data (and which may lead to unhelpful responses), by Scope’s current pre-occupation with emphasising prevalence of disability (which seems linked to their own strategic repositioning) and the conclusions they draw from the data on under-estimation of prevalence and finally by somewhat thin and perhaps contradictory-in-places recommendations. I’ll take each of these in turn:

Things sometimes look worse because they’re getting better

Scope’s polling finds that the percentage of non disabled people perceiving there to be a lot of prejudice to have declined more steeply than disabled people since 2000 (10 percentage points compared to 5 percentage points). It concludes this to be a problem because it implies non-disabled people are in effect increasingly ignorant of the prejudice that disabled people are still more likely to report.   There is no doubt that prejudice and discrimination remains prevalent, with profound implications for some groups such as people with learning disabilities and much of the public is probably unaware it goes on. That is a clear problem. However, to respond to this data in the most productive way I think we need to interrogate what it is saying a bit more deeply.

First of all, the finding that 5% fewer disabled people today than in 2000 regard there to be a lot of prejudice towards disabled people is a positive finding that somewhat flies in the face of claims made by some that prejudice and hostility have become more commonplace in recent times. It’s a shame Scope don’t frame this finding in this way, perhaps referencing evidence that the overall incidence of disability hate crime also appears to have declined in recent years too, contrary to claims otherwise, for example.

Second, it would be helpful to ascertain the degree to which disabled people’s expectations to be treated fairly and with dignity and respect have or have not increased over a period since 2000, which saw major expansion of anti-discrimination law and awareness-raising activities surrounding it. Greater expectations would correspond with greater recognition and intolerance of prejudicial attitudes and behaviours. Just as increased reporting of disability hate crime is often miscast as an increase in incidence, so disabled people’s perception that there is ‘a lot of’ prejudice could reflect an improvement in awareness and expectations, not necessarily a wholesale lack of progress in tackling it per se.   Such a finding would not of course negate the need to robustly tackle such prejudice, but it would indicate an increased strength and resolve to do so, on which to build, not simply failure to have done so.   Looking at the timeframe from 2000 it would also be hugely helpful to know what caused the spike in perceptions of prejudice among disabled and non disabled people in 2012 – the Welfare Reform Act? The Paralympic Games?

As for the sharper decline in non disabled people’s recognition of disability related prejudice, we can see this – as the report does – as a dangerous decline in awareness, leading to ambivalence and that the answer therefore is to bring non-disabled people’s perceptions into line with those of disabled people. However, people believing there to be less prejudice towards a group (despite that group still facing it) is not necessarily a bad thing if it is evidence of a ‘social norming’ effect. This has been harnessed to hugely successful effect by LGBTi campaigners, especially with regard to campaigns for Equal Marriage around the world.   That is to say, people believing there to be less prejudice towards a group can help create the climate in which prejudice towards that group is deemed unacceptable, or in which thinking positively about a group becomes the norm. I was reminded of the instance a few years ago where a couple of parents comments on the CBBC website that the presenter Ceri Burrell, who has a visible impairment, ‘frightened’ their children. A quick look at the website found that several hundred parents had replied to say how positive they found Ceri’s presence, yet It was the prejudicial views of the two initial parents that was widely reported. The sharp decline in perception among non-disabled people of disability prejudice could be a sign that the public at large increasingly regards such prejudice as wrong. It would be useful to understand in more depth what the 78% who don’t think there is ‘a lot of’ prejudice do think about disability because therein may lie the clues of how to overcome prejudicial thinking and attitudes.

Big numbers don’t always make people sit up and listen

Regarding the focus on gaps in perception concerning the prevalence of disability, I’ve noticed Scope regularly tweeting that there are 14 million disabled people in Britain. The report argues that:

‘Disabled people should have the right to live their lives without the attitudinal barriers they currently face. To make that happen, non-disabled people’s understanding of the scale of this problem, and the scale of any solutions required, must be a central part of achieving change.’

Yet research carried out by the Frameworks Institute looking at the communications of several international disability organisations found:

‘Organizational materials in the sample relied heavily on the use of statistics, facts, and numbers to emphasize the scope of the issue. In other words, facts are a primary framing strategy in the field. The assertion underlying these numerical statements is that disability issues deserve our collective attention because the population of people with disabilities is extremely large.

…There are two primary reasons that facts, when presented alone, fare so poorly as a communications strategy. First, numbers provide little explanatory power; on their own, they do not help people understand underlying causes, effects, or opportunities for remediation. Second, when facts or numbers are provided without an organizing principle, or frame, that helps the audience understand the larger story that the numbers are meant to tell, people easily default to their existing ways of understanding the issue. In most cases, these dominant understandings direct people away from perspectives that allow for productive issue engagement and problem-solving.’

That is say, it’s unlikely that knowing there are 14 million people in the UK who meet the Equality Act definition of disability has – on its own – any useful effect on attitudes and awareness. However, the report expresses concern that:

‘If this group is seen to be smaller than it is, then attempts to remove these barriers may be dismissed by some as a niche concern. Similarly, under-representation of disabled people, whether in the workplace, on-screen, or in public life, may seem a less significant concern.’

I think there are far more targeted and effective ways to do this. For example by noting how:

• Almost half of people in poverty in the UK are in a household with a disabled person or are disabled themselves
• 23% of all unemployed people are disabled, as are nearly half of those who are economically inactive but would like to work
• The current generation of unqualified people has very high rates of disability, and the disabled members of the group have very low rates of employment. Their employment rates are more affected by disability, than (at the other extreme) people with degrees.
• Almost half of social housing tenants have a long term limiting illness or disability.

The above examples give context, direction and scale and help make these injustices the problem of those who have the power to affect change.

Most disabled people do not identify as disabled – and why should they?

Interestingly, unlike the section on gaps between disabled and non-disabled people’s perceptions of prejudice, the report doesn’t say anything about gaps in perception of prevalence, perhaps because there are none. This leads to another issue that the report grapples with: a lack of recognition, by non disabled people, that that some people they may already know and who are defined as disabled for the purposes of the Equality Act, are disabled.   The report suggests that:

‘Positive attitudes towards disabled people rely on people being aware that other people around them are disabled. Survey results relating to contact may also be affected by disabled people’s willingness, confidence or opportunity to talk openly about disability, and whether they choose to identify as a disabled person

The results suggest that some people must be unaware that they know
any disabled people. Given the apparent relationship between contact and improved attitudes, understanding and overcoming these barriers should be a key part of improving attitudes.’

I find this idea problematic for two reasons. Firstly, if we understand prejudice as ‘preconceived opinion that is not based on reason or actual experience’ isn’t the ideal scenario that people simply relate to people as individuals, not to them as a member of an ‘out-group’ that they are either perceived to, or required to belong? Are we interested in tackling prejudice towards ‘disability’ or towards disabled people? Would we have succeeded in tackling prejudice experienced by disabled people through constructing a preferred ‘attitude to disability’? Social model advocates have argued so in the past, and I’ve found myself sympathetic to their argument, but Scope doesn’t obviously seem to be referring to the social model definition of ‘disabled person’ here anyway, so what is the purpose of doing so?.

Related to this, the majority – 58% – of people defined as disabled for the purpose of the Equality Act do not themselves self-identify as disabled, so the question of recognition is far from a ‘perception gap’ between disabled and non-disabled people, but between common perceptions and the – very broad – criteria used in the Equality Act. And here comes a conundrum: if disability attracts prejudice, what advantage is there in identifying as such and why would we encourage this? And as I say above, if our interest is in eliminating the prejudice encountered by disabled people, why would we demand people assume an identify to which preconceived ideas, not about the individual in question, are attached, when they presently are not the object of these?

This was a major issue faced by the Disability Rights Commission in meeting its statutory obligation to promote awareness of rights and obligations under the Disability Discrimination Act and it did so not via encouraging a mass exercise in self-identification – though some felt this should be the strategy – but by conducting audience research to understand how the group non identifying as disabled did self- identify. While some were in deep denial, the majority when asked acknowledged their specific impairment and recognised that they sometimes faced unfair treatment for reasons connected to it, which they wished to see challenged. DRC research also found that small employers often already hired disabled people and made adjustments but didn’t recognise them as such. The DRC’s communications from then on deliberately made reference to specific impairments and used the global term ‘disabled people and people with long term health conditions’ or ‘people with rights under the Disability Discrimination Act’.

There is another important reason to look beyond global attitudes to disabled people. The public opinion agency Ipsos-Mori used to track attitudes to various ‘equality groups’ including disabled people. Its key question to the public on attitudes to disabled people was something along the lines of ‘would you be happy to have a disabled GP’ and the results showed improvements over time. But what if the question was ‘would you be happy to have a GP with a learning disability’ or ‘a GP with schizophrenia’?   I’m unconvinced that attitudes to disabled people are uniform, with differences in impairment not the sole variable.   Hence attitudes to people with physical impairments, or mental health conditions could see improvements, with little change in attitudes to people with autism or learning disabilities.   Or certain disabled people may be the object of negative attitudes because of their circumstances rather than their characteristics, such as people claiming benefits or those living in a poor area.  If attitudes are not uniform, then neither are any solutions we might conceive of.

One vision….?

Which leads me to the recommendations. I was pleased to see ‘contact theory’ referenced in the report – something the DRC did tentative work on before being wound up in 2007, yet not picked up by the EHRC or anyone else until now.   But the only recommendation Scope make to these ends is for there to be a more robust effort to meet the government’s existing goal of 1 million more disabled people being in work. Clearly workplaces are important places for contact and interaction, but the report says nothing about all the other domains of associational life – schools, places of worship, sports, football supporters, Cub-Scouts and Girl Guides, youth clubs and so on – the places where we come together and meet one another. Inclusive education in particular is a huge omission.  Nor does it say anything about the influence of power in those relationships, which lies at the heart of tackling the prejudice Scope notes that disabled people are too often perceived as ‘objects’ of care, not active citizens.  Surely the findings and theory suggest the need for a concrete social interaction strategy, with contact theory at its heart? But we should also ask whether it is sensible to expect to ‘change attitudes to disabled people’ as a whole? Does people having more contact with people who use a wheelchair or have a sight impairment change attitudes to people with mental health conditions?

Similarly, the report argues that the findings give cause a new dedicated cross-Departmental strategy on disability. This flows naturally from Scope’s apparent insistence on trying to mould a big and diverse bunch of people into one disability category, to encourage them all to take on that description of themselves, and increase the degree to which other people recognise that category as a thing too – with the aim of raising the status of the group.   But isn’t this also a contradiction?  Reinforcing the idea of an – albeit large – outgroup is also likely to reinforce rather than help dismantle prejudice. Aren’t there other ways of recognising that there are different routes to fulfilment and the exercise of rights, while finding all sorts of ways to make common cause across a disability/non-disability divide that needs to be broken down rather than risk being reinforced in this way?

Prejudice blights lives and undermines opportunity. As the recent LeDeR report found, it causes people to die needlessly. Scope are to be commended for putting the issues back on the agenda. We should redouble our efforts to tackle it, learning from other fields such as LGBTi or race for example. If we’re going to succeed, we need to mind the gap between what the available evidence appears to say and what it actually means, and avoid promoting ideas that may have the unintended consequence of making matters worse.

 

 

 

 

 

 

 

 

 

 

 

 

Following Grenfell, how can human rights have real meaning in the ‘small places, close to home’?

“Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.”

Eleanor Roosevelt, “In Your Hands: A Guide for Community Action for the Tenth Anniversary of the Universal Declaration of Human Rights.” Thursday, March 27, 1958. United Nations, New York.

 In the wake of the horrific fire at Grenfell Tower in 2017, numerous organisations and individuals were quick to connect human rights to the event and to the issues perceived to surround it. Commentators focused on the alleged failure of the State – national and local – to protect the right to life and to fulfil the right to an adequate standard of living, including to safe housing. The Equality and Human Rights Commission has launched a non-statutory Inquiry into the equality and human rights implications of Grenfell.  Others have explored the issue through the lens of austerity, particularly the duty to fulfil economic and social rights to the ‘maximum of available resources’ following suggestions that fire safety was compromised to save money. Grenfell has also become a byword in debates about socioeconomic inequality, given the status of many residents. To these ends, Grenfell has spotlighted precisely why human rights matter most in the ‘small places, close to home.’

At the same time, the reality is both that the public bodies involved already had obligations to respect, protect and promote human rights, while the residents could, in theory, have invoked human rights in their struggle to secure safe homes prior to the fire.   Rather than note, post hoc, that the events leading up to and following Grenfell engage human rights, a bigger question perhaps is to ask why human rights seemingly played no evident part in the resident’s struggle or in the decision-making of the local council and its agents in the events that led to the fire? I believe the answers to this question could have profound implications for how we approach the promotion and protection of human rights in future.

One possibility is that human rights are inadequate – or at least provide only a small part of the solution. If one regards inequality as the underlying issue, then Samuel Moyn’s forthcoming book ‘Human Rights are Not Enough’ questions whether human rights offer the solution:

“With only rare exceptions, material equality is not something that human-rights law and movements ever set out to defend….. Human-rights law lacked the norms, and human-rights movements the will, to advocate for a serious redistributive politics. Even in theory, with their focus on ensuring a bare floor of material protection for individuals in a globalized economy, human-rights movements did nothing to prevent the obliteration of a wealth ceiling. With the decline of the welfare state, human-rights movements both failed to attack the victory of the rich and struggled to cope with the poverty of the rest. The political and legal project of human rights became a companion to the rise of inequality, which paved the road to populism and further rights abuses…..we must recognize the limits of human rights, and admit our own failure to contribute bold visions and projects outside of the rights framework. Human-rights movements were latecomers to the era of distributional concerns. Even when they did take an interest, they set a low bar, focusing only on saving the worst off from destitution. Human rights are not to blame for inequality, but we need to face our responsibility for treating them as a panacea.”

The inclusion in the Equality Act 2010 of a ‘socioeconomic duty’ on public bodies was a recognition of the shortcomings of anti-discrimination law as a vehicle for tackling socioeconomic inequality. The duty has however lain dormant, with Conservative-led government’s since 2010 refusing calls to commence it.  There has also been an upsurge in interest in economic, social and cultural rights since 2010, driven in response to austerity, but it is important – as Moyn points out – not to confuse pursuing the ‘floor’ of human rights with the far broader challenge of narrowing the gap between rich and poor.

Another possibility is that human rights are too easily disregarded, especially where segments of the population enjoy relatively low social status or lack political power. In an interview with the Guardian newspaper, the UN Special Rapporteur on housing, Leilani Farha contemplated whether a human rights based approach might have reshaped the way the residents were perceived and in doing so have helped prevent the fire:

“If the population wasn’t viewed as somehow undeserving, as really lucky to receive the benevolence of state support for housing, if they were viewed as rights holders, I just wonder if that same decision (to use cheaper cladding) would have been made.”

Farha calling on national and local government and wider society to show greater respect for the human rights of social housing residents is not unhelpful, but the question of how this greater respect can be secured is left unanswered.   It is an equally relevant point in other spheres, including social security, where public attitudes and discourse often debase and demonise claimants. The protection and promotion human rights provides an imperative – and potentially the goal – but again it is not human rights law, standards or ‘approaches’ that provide the answers. I also struggle to see how a narrative-shift to describe people living in social housing or claiming benefits as ‘rights holders’ would be helpful. Quite the contrary, I fear it would inflame the situation further, deepening the basis for much stigma which is the idea that people are unfairly accessing protection and entitlements without commensurate responsibilities.

Others have put the ownership model in the dock. The think tank Legatum has argued:

‘if Grenfell Tower had been owned by residents they would never have approved the refurbishment that led to the fire, because no homeowner would have considered those particular works either necessary or a good use of their own resources.’

It proposes that the State should put estates like the Lancaster Estate on which Grenfell Tower was situated into Trust and hand ownership – and hence control over decision-making – to the residents.   This echoes ideas in other areas of human rights thinking, such as in disability rights where transferring control over public resources via measures such as direct payments and personal budgets has come to be recognised as an important way to respect, protect and fulfil human rights obligations, especially the right to autonomy.

What links these analyses and proposals together are questions of power and status – political, legal, economic and social – and how they might be transformed.

Human rights are not – nor were they ever intended to be – the cure to all society’s ills, as Samuel Moyn so eloquently points out. Grenfell should challenge us to commit to tackling socioeconomic inequality, to consider the influence of ownership and control over assets and place and to attend to corrosive public attitudes towards people in low incomes and those requiring support. Human rights may play only a very small part – if any – in doing so. But I still believe existing human rights law and standards could have and can in future play a greater part in securing justice in these ‘small places.’

So we must ask ourselves: How could the residents of Grenfell have drawn upon – or had the means to draw upon – existing human rights law and standards in their struggle to make their homes safe and habitable? How can other highly localised, barely constituted groups or pop-up campaigns draw upon human rights law and standards to win change, in areas such as health and social care, criminal justice, housing, children’s services or planning for example? How would they find their way to human rights and to expert advice and support? How would we reach them, and what with?   What can human rights NGOs do? How can donors support them? What can we learn from things like community organising and the localism agenda? What new partnerships might we strive to form with those committed to empowering local communities?

Human rights should provide everyday people, in everyday struggles for justice and fairness with added firepower, not as the solution, but certainly as part of the solution. I believe that strategically this will require a concerted effort by donors, NGOs and human rights bodies to truly democratise human rights.

In May, the Thomas Paine Initiative, which I direct, will host a meeting for donors, NGOs and other interested parties to meet and discuss the challenges and opportunities this question raises. In the meantime, please do share your thoughts and ideas, or get in touch.

neil@global-dialogue.eu

 

Image from Power to the people: Citizens should soon have more voice to sway policy by HEC Paris here

 

 

 

 

 

 

 

 

 

 

 

 

Implementation of the UN Convention on the Rights of Persons with Disabilities – a basic monitoring checklist

A few years ago I worked with Professor Gerard Quinn and Abigal Rekas on a manual for National Human Rights Institutions on human rights and disability, which you can read here.

The basic monitoring checklist I drafted was not used in the manual & while it could do with some development I think it’s a good starting point for anyone – duty bearers, independent monitors, disabled people’s organisations – thinking about what implementation of the Convention means Article by Article, so in the spirit of not allowing good things to go to waste, open source sharing, and my general lack of commercial nouse, here it is…..

Basic monitoring checklist – implementation of the Convention on the rights of persons with disabilities

CRPD Articles	Structures	Processes	Outcomes
Equality and non-discrimination (Article 5)	Do persons with disabilities enjoy a constitutional guarantee of equality?   Is discrimination against all persons with disabilities prohibited in law?   Are all areas covered by the CRPD addressed by anti-discrimination law?   Does the approach to disability discrimination include denial of reasonable accommodation?   Has a competent body been designated to promote, enforce and monitor equality and non-discrimination?	Has guidance been produced for duty-bearers, rights-holders and advocates, including in relation to reasonable accommodation?   Can rights-holders secure adequate redress?   Is the law being enforced?	What gaps in outcomes exist between persons with and without disability across key domains e.g. employment participation, health outcomes, use of public   What complaints are being made regarding disability discrimination – are there clear patterns and evidence of systemic problems?
Awareness (Article 8)	Has the State initiated public awareness campaigns to promote awareness of and receptiveness towards the rights of persons with disabilities?   Does the national school curriculum include   Has the State taken steps to encourage portrayal of persons with disabilities by the media in a manner consistent with the aims of the CRPD	How many people or organisations have been reached by campaigns regarding awareness or receptiveness?   Has the State evaluated the impact of its awareness raising activities?	What does the public think about the rights of persons with disabilities?   What do persons with disabilities perceive the attitudes of the public to be towards them?   How are the lives of persons with disabilities typically characterised by the media? Does this correspond with the aims of the CRPD?
Accessibility (Article 9)	Has the State ensured the development of minimum standards and guidelines regarding accessibility?   Has the State taken effective measures to ensure that private entities open to or providing services to the public take accessibility into account?   Has the State taken action to promote universal design principles, including in relation to new technologies?	Has the State taken sufficient steps to promote and monitor the implementation of minimum standards and guidelines?   Has the State provided training for stakeholders (including planners, architects, designers, engineers, manufacturers, persons with disabilities) on accessibility?	Can persons with disabilities move freely and spontaneously around the built environment and use public transport on an equal basis with others?   Can persons with disabilities access goods, facilities and services on an equal basis with others?   Can persons with disabilities access information and communication on an equal basis with others?   Do persons with disabilities benefit equally from technological innovations?
Right to Life (Article 10)	Does the State criminalise the murder and manslaughter of persons with disabilities and properly enforce the law?   Has the State taken steps to prevent accidental deaths of persons with disabilities, including those detained under mental health laws or residing in social care facilities?	Are official independent investigations automatically conducted following the deaths of persons with disabilities detained by the State?	Are cases involving the murder or manslaughter of persons with disabilities effectively investigated and prosecuted?   What number of persons with disabilities have died while detained by or in the custody of the State?
Situations of Risk and Humanitarian Emergencies (Article 11)	Are the rights of persons with disabilities integrated into Disaster Risk Reduction protocols?	Have steps been taken to rehearse implementation of disaster reduction plans involving persons with disabilities?   Has the effectiveness of disaster reduction plans been evaluated with respect to the rights of persons with disabilities?	What has been the effectiveness of ‘drills’ in minimising risks to persons with disabilities   What has been the situation of persons with disabilities following natural disasters and humanitarian emergencies?
Equal Recognition Before the Law (Article 12)	Does the law prohibit people from being denied legal capacity on grounds of disability?   Is law and practice founded on a model of supported rather than substitute decision-making?	Can persons with disabilities access support with decision-making that is designed to respect their right to equal recognition before the law?   Has the State taken action to ensure that third parties such as banks, health services or landlords respect the right of persons with disabilities to equal recognition before the law?	How many persons with disabilities are subject to substitute decision making regimes?
Access to Justice (Article 13)	Has the State ensured the development of law, policies and guidelines regarding access to justice for persons with disabilities including in relation to:   –      Reporting crimes to the police –      Arrest of persons with disabilities –      Detention of persons with disabilities –      Persons with disabilities as witnesses and defendents –      Ensuring consideration of persons with disabilities is mainstreamed into actions and activities such as promoting access to justice for victims of gender-based violence or child abuse	Are laws, policies and guidelines known about and followed?   Is training provided to all levels of the justice system (civil and criminal) including for the police and prison staff, legal professionals and the judiciary?	Can persons with disabilities secure access to justice on an equal basis with others?
Liberty & Security of the Person (Article 14)	Does the law prohibit persons from being deprived of their liberty on grounds of disability?   Does the law prohibit persons with disabilities from being detained on grounds of their perceived risk to themselves or others?   Are persons with disabilities able to challenge deprivation of liberty and seek compensation?	How effective are any procedural or judicial safeguards regarding deprivation of liberty?	How many persons with disabilities are detained in institutions including psychiatric hospitals and social care facilities?   How long have persons with disabilities been detained in such institutions?
Freedom from torture, inhuman or degrading treatment (Article 15)	Has the State developed effective law, regulations and oversight to protect persons with disabilities from torture, inhuman or degrading treatment?   Are practices such as compulsory medical treatment, solitary confinement, physical restraint and non-consensual electroconvulsive treatment prohibited in law?   Is the use of medical treatment, physical restraint and other treatments effectively regulated?   Are policies and systems in place to address persistent targeted harassment of persons with disabilities?   Is the National Preventive Mechanism under OPCAT empowered to address situation of persons with disabilities detained in or confined to institutions?	Are laws prohibiting the use of methods which amount to inhuman and degrading treatment enforced?   Are the bodies tasked with regulating and monitoring places of detention adequately resourced, sufficiently independent and effective?	Are persons with disabilities subject to torture, inhuman or degrading treatment such as compulsory medical treatment, solitary confinement, physical restraint and non-consensual electroconvulsive treatment?   Can persons with disabilities secure protection and redress?
Freedom from exploitation, violence and abuse (Article 16)	Has the State ensured that all facilities and programmes designed to serve persons with disabilities are independently monitored?   Has the State taken legal or programmatic steps to recognise exploitation, violence and abuse affecting persons with disabilities, such as violence against women with disabilities, abuse and exploitation of children with disabilities (including trafficking) and disability hate crime?   Does the State monitor incidents of exploitation, violence and abuse affecting persons with disabilities?	Are facilities and programmes designed to serve persons with disabilities routinely inspected and monitored by competent authorities?   Have criminal justice agencies developed policies and initiated actions to improve operational effectiveness with respect to protecting persons with disabilities and providing redress following incidents of exploitation, violence and abuse   Is counselling available to persons with disabilities who have encountered violence, exploitation and abuse?	What is the incidence of exploitation, violence and abuse experienced by persons with disabilities including violence against women with disabilities, abuse and exploitation of children with disabilities and disability hate crime?   What proportion of such crimes are reported to the authorities, including the police, what proportion are recorded and what proportion are prosecuted?   What proportion of persons with disabilities who have encountered exploitation, violence and abuse have received counselling?
Protecting the integrity of the person (Article 17)	Has the State taken action – including prohibiting in law – to ban practices that violate the integrity of disabled persons such as non-consensual sterilisation, abortions, the administration of drugs, electroconvulsive treatment and forms of restraint?	Has the State taken steps to enforce laws protecting the integrity of the person, including through monitoring and criminal sanctions?	Do such practices still occur?
Liberty of movement and nationality (Article 18)	Does the State ensure that persons with disabilities can acquire and change nationality on an equal basis with others, are not deprived of their nationality arbitrarily or on the basis of disability, or of their ability to obtain, possess and utilize documentation of their nationality or other documentation of identification, or to utilize relevant processes such as immigration proceedings, are free to leave any country, including their own and are not deprived, arbitrarily or on the basis of disability, of the right to enter their own country?	Is documentation concerning immigration and nationality available in accessible formats?   Are proceedings concerning immigration accessible to persons with disabilities?	Are all children with disabilities registered at birth and given a name and nationality?   Do persons with disabilities enjoy liberty of movement and nationality on an equal basis with others?
Living independently and being included in the community (Article 19)	Do persons with disabilities enjoy legal rights to exercise meaningful choices over where and with whom to live on an equal basis with others?   Does the law prevent persons with disabilities from being obliged to live in a particular living arrangement?   Do targets exist to reduce the number of people confined to institutions?	Is there sufficient investment in community based accommodation and support such that persons with disabilities have meaningful choices that prevent their isolation and segregation from the wider community?   What mechanisms are in place to facilitate the exercise by persons with disabilities of choice and control over where and with who they live, such as personal budgets or personal assistance schemes?	What proportion of persons with disabilities live in community settings versus institutions?   Do persons with disabilities report that they have control over where and with whom they live?
Personal mobility (Article 20)	Has the State taken effective measures to ensure personal mobility with the greatest degree of independent for persons with disabilities including by inter alia facilitating access to aids and equipment and by providing training and information to persons with disabilities?	Is there sufficient investment in support for personal mobility?	What proportion of persons with disabilities requiring support with mobility are able to access such support?   What is the gap in outcomes between persons who require support with mobility and those who do not in terms of travel and participation in community life?
Freedom of expression and opinion (Article 21)	Has the State taken steps, including legislative steps, to ensure that persons with disabilities can receive and impart information, and in particular to ensure that public and private entities produce information in accessible formats and offer accessible modes of communication such as sign language?	Has that State taken steps to promote good practices in relation to accessible information and communication across public bodies and private entities and among society more widely?	Can persons with disabilities access and impart information and communicate on an equal basis with others?
Respect for privacy (Article 22)	Does the State ensure that the right of persons with disabilities to privacy routinely respected, irrespective or living arrangements and with particular respect to personal information regarding health and rehabilitation?	Are the State’s data protection safeguards sensitized to the situation of persons with disabilities?   How does the State ensure that the privacy of persons with disabilities is respected by those providing support?	Are there incidents of the right of persons with disabilities to privacy being violated?
Respect for home and the family (Article 23)	Are all persons with disabilities legally permitted to get married and start a family?   Does the State support parents with disabilities in the performance of child-rearing responsibilities?   Does the State support parents of children with disabilities with their child rearing responsibilities?   Are all persons with disabilities able to retain their fertility on an equal basis with others?   Does the law allow children be separated from their parents on the basis of (the child or parents) disability alone?   Do judicial safeguards exist regarding the separation of children from their parents, where either has a disability?   Where families are unable to support a child with a disability, are policies and strategies in place to support the child within the wider family or within the community in a family setting?	Can persons with disabilities access information and support regarding their reproductive rights?   Can parents with disabilities access support with child-rearing?   Can parents of children with disabilities access support with child rearing?	Are persons with disabilities prevented from having relationships, including sexual relationships and/or from starting a family?   What proportion of children born to parents with disabilities stay with their parents?   What proportion of children with disabilities stay with their parents?
Education (Article 24)	Do all children with disabilities enjoy the right to be educated in the general education system in the communities in which they live?   Is the State taking concrete steps to develop an inclusive education system, for example through laws, policies and implementation strategies?   Are children with disabilities entitled to individualised support with learning?   Does the State invest in supporting the development by persons with disabilities of life and social development skills to facilitate full participation in society, such as the use of Braille and sign language?   Is discrimination prohibited in tertiary and higher education?	Has the State ensured the programmes of initial and ongoing teacher training are grounded in the principle of inclusive education?   Has the State provided sufficient funding to improve the accessibility of educational establishments and for the provision of individualised support?	What proportion of children with disabilities are enrolling in and completing primary and secondary education?   Is this situation improving and at what rate?   What are the comparative levels of educational attainment between children and adults with and without disabilities? Is this situation improving and at what rate?   What are the comparative numbers of children with disabilities in special school versus mainstream school places? Is this situation improving and at what rate?   What percentage of persons with disabilities are entering higher education? Is this situation improving and at what rate?
Health (Article 25)	Has the State taken steps to ensure that persons with disabilities enjoy access to the highest attainable standards of health without discrimination, including in relation to health and life insurance?   Has to State ensured the provision of supports to persons with disabilities to manage their impairment or health condition and to prevent further deterioration or the emergence of secondary conditions?	Has the State taken steps to raise awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care?	What are the comparative health outcomes between disabled & non-disabled people including life expectancy?   Does evidence exist of people being denied access to health services on an equal basis with others, including life-saving health care?
Habilitation and Rehabilitation (Article 26)	Has the State organised, strengthened and extended comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life?	Has the State promoted the development of initial and continuing training for professionals and staff working in habilitation and rehabilitation services? Has the State promoted the availability, knowledge and use of assistive devices and technologies, designed for persons with disabilities, as they relate to habilitation and rehabilitation?	Can persons with disabilities access multi-disciplinary habilitation and rehabilitation services?
Adequate standard of living and social protection (Article 27)	Does the State ensure that persons with disabilities have access to clean water and sanitation?   Do poverty reduction programmes exist to eliminate poverty among persons with disabilities?   Do social protection programmes address disability-related costs?   Do persons with disabilities enjoy equality of access to public housing programmes?	Does the State measure and monitor levels of relative and absolute poverty among persons with disabilities? What steps has the State taken to ensure private entities involved in the provision of essential services ensure equal benefits for persons with disabilities?	Do persons with disabilities enjoy equal access to clean water and sanitation   What are the levels of relative and absolute poverty among persons with disabilities – how do these compare to the general population?   How many persons with disabilities are waiting for accessible housing or living in unsuitable housing?
Work and Employment (Article 28)	Is discrimination, including the denial of reasonable accommodation, prohibited in all areas of employment and by all employers?   Has the State taken action to ensure just and favourable conditions of work for persons with disabilities including equal pay, safe and healthy working conditions and protection from harassment?   Has the State initiated effective programmes concerning vocation training, career development and self-employment?   Has the State taken positive steps to promote employment of persons with disabilities in the public and private sectors, including via affirmative action?	What steps has the State taken to promote awareness of the rights of persons with disabilities among employers?   Does the State provide support to employers with respect to employing persons with disabilities, for example through advice and information or practical and financial support in providing reasonable accommodation?   What goals or targets does the State have with respect to increasing the employment rate of persons with disabilities and how is this monitored?	What is the overall employment rate of persons with disabilities and how does this compare with other countries?   What is the gap between employment rate of persons with disabilities and general population?   Do persons with disabilities enjoy equal pay?   Are persons with disabilities more likely to report harassment at work?   How many persons with disabilities have been assisted into employment by targeted support programmes?
Participation in political & public life (Article 29)	Do all persons with disabilities have the legal right to vote in elections?   Can all persons with disabilities seek election?   Does electoral law require reasonable accommodation, including in relation to election materials being made available in accessible formats, accessible voting procedures and support for persons with disabilities to vote?   Does disability discrimination law cover public appointments and political parties?	Is participation by persons with disabilities in elections monitored?   Is guidance provided to election officials regarding non discrimination and accessibility?   Do targets and strategies exist to increase the participation of persons with disabilities in political and public life?   Are Parliamentary buildings and procedures accessible to persons with disabilities?	What percentage of persons with disabilities vote in elections?   What percentage of persons with disabilities have experience barriers when trying to vote?   How many Members of Parliament are persons with disabilities?   How many public appointees are persons with disabilities?
Participation in cultural life, leisure, recreation and sport (Article 30)	Has the State taken all appropriate measures to ensure persons with disabilities enjoy access to cultural life, including cultural materials, television, film and theatre and to places for cultural performances or services and, as far as possible, enjoy access to monuments and sites of national cultural importance? Has the State adopted measures to States Parties shall take appropriate measures to enable persons with disabilities to develop and utilize their creative, artistic and intellectual potential? Has the State taken steps to prevent intellectual property rights unreasonable preventing access by persons with disabilities to cultural materials? Has the State formally recognised sign language as an official language? Has the State adopted measures to promote the participation by persons with disabilities in mainstream and disability-specific sport as participants and spectators? Has the State adopted measures to ensure that children have equal access to play, recreation and leisure, including at school? (e) To ensure that persons with disabilities have access to services from those involved in the organization of recreational, tourism, leisure and sporting activities.	Do targets and implementation plans exist in relation to the various obligations under Article 29?   Has the State engaged key agencies and actors in the fields of culture, leisure, recreation and support to support implementation of Article 19?   Do any targeted programmes exist to increase the participation and contribution of persons with disabilities in the fields of culture and sport?	To what extent do persons with disabilities engaged with or in cultural, recreational, leisure or sporting activities and how does this compare to the general population?   Are persons with disabilities visible in the fields of culture and sport?
Statistics and data collection (Article 31)	Has the State committed to improve the quality of statistics and data collection regarding the rights of persons with disabilities?	Has the State taken steps to ensure that reliable and comparable data is being collected which is capable of measuring implementation of the Convention?	Does the data available allow disaggregation of the barriers experienced by persons with disabilities
International cooperation (Article 32)	Has the State adopted any laws, regulations or guidelines concerning disability inclusive development?	Is the State providing funding or technical assistance to other States or otherwise cooperating with other States in efforts to implement the CRPD?
National implementation and monitoring (Article 33)	Has the State identified a focal point or points within government to implement the Convention?   Has the State established, strengthened, designated or maintained a framework to promote, protect and monitor implementation of the Convention?   Does the framework include a Paris Principles compliant national human rights institution? Are persons with disabilities formally involved in the monitoring framework?	Has the State committed adequate resources to the focal point, independent mechanism and to organisations of persons with disabilities such that they are able to discharge their roles and responsibilities adequately?   Has the State taken steps to ensure the effective involvement of persons with disabilities in implementing the Convention?	Does a framework exist and does it conform with the requirements of Article 33?
Reservations (Article 46)	Is the State proposing or has it insisted on entering any reservations or interpretive declarations when ratifying the CRPD?   Are the reservations compatible with the object and purpose of the CRPD	Has the State provided compelling reasons for entering any reservations or declarations, including in a statement to Parliament?   Has Parliament had the opportunity to scrutinise any proposed reservations or interpretive declarations?	Is the effect of any reservations or interpretive declarations to render lawful acts of discrimination against persons with disabilities in the enjoyment of their human rights?

 

 

 

 

 

Moving beyond a ‘human catastrophe’

Neil Crowther, 24 February 2018, Oxford University

Raymond Williams argued that ‘to be truly radical is to make hope possible rather than despair convincing’.

Years later Barack Obama talked of the ‘audacity of hope’.

We could liken such statements to the rather icky ones that get posted on Twitter and Facebook or which adorn the noticeboards in some London tube stations.

But we would be wrong to.

It is scientifically proven that crisis communications, especially when underpinned by vivid individual case studies and absent of solutions fosters fatalistic attitudes towards issues.

This is why organisations such as the Joseph Rowntree Foundation have begun to reframe the way we talk about poverty, why the NSPCC has reframed the way it talks about child protection, why Amnesty is looking a how it can change the way it communicates around human rights and why environmental campaigners have reframed the way they talk about climate change.

Successful communications combines a sense of urgency with a sense of possibility, and understands that the way an issue is framed is at least, if not more important, than facts and evidence

If in any doubt, just look at the debate happening in the USA right now on gun control and schools. It is being framed not as an issue concerning the ready availability of guns, but as the lack of availability guns in schools with which to defend students. The solution: arm teachers.

The decision by the Chair of the UN Committee on the Rights of Persons with Disabilities to describe the impact of austerity measures on disabled people in the UK as a ‘human catastrophe’ may have been based on fact, and did springboard the Committee’s findings into the national news media in an unprecedented way.

But the impact of that coverage – and of continually referring back this phrase in campaign materials and communications – seems unlikely to serve the cause of disability rights well at all.

Indeed, I see campaigners on Twitter express their dismay that no one appears to be listening to all the evidence of suicides, deaths and despair linked to welfare reform. Such evidence galvanizes existing supporters, but it most likely repels others.

This is not an argument to sweep such evidence under the carpet. Rather it is to say that leading on it in our campaign communications may not be particularly helpful in ensuring that it is addressed.

Similarly, messages which imply that disability rights is extremely costly seem unlikely to be helpful in challenging austerity.

When the charity Scope launched its report into the important issue of the extra costs of living faced by disabled people last week, an article by its Chief Executive in the Huffington Post carried the headline ‘disability comes with a major price tag.’

Is this helpful?

So my first recommendation is that we find the resources to consciously reframe the way we talk about disability rights.

We need a positive story of change, rooted in evidence of the most effective values and frames to win public and political support.

Related to this, we need to use the CRPD not solely as a weapon of resistance, but more importantly as a tool to chart out and win progressive change.

There are numerous opportunities to employ the Convention to influence emerging agendas and to reshape the world around us.

These include the ongoing review of deprivation of liberty safeguards and mental capacity law, the Mental Health Act review, the review into the funding of social care or in thinking about social work practice for example.

In Scotland, a new statutory Committee will assess proposed social security laws for compliance with human rights obligations.

At the EU level the Convention has helped promote and shape the European Accessibility Act and regulations directing member states to use European funding to support independent living rather than institutionalisation – how can we take this models and employ them here in the UK once we leave the EU.

It also includes broad social and economic agendas such as the Industrial strategy.

We must do all we can to put disability rights at the heart of the policies and strategies that shape our world.

Moreover, when I think back to the key milestones of disability rights, these have not been disabled people reacting to the world around them, but advancing and winning the case for new ideas and agendas: independent living, direct payments, the Disability Discrimination Acts.

Using the Convention in this way also requires that we refocus our efforts from the international to the domestic.

I think far too much energy and resources are being devoted to securing the censure of the UN Committee and far too little on using the Convention to leverage change here at home.

Partly, I think this may be down to a misapprehension about the role and status of the Committee.

It is a peer review mechanism, not a Court.

It issues findings, not binding judgments.

It is more accurate to think of a State examination as a job appraisal than a court case.

It is authoritative, but it does not have absolute authority.

Contrast the influence and impact of the Committee’s already 4-year long inquiry into the impact of austerity measures on disabled people with the recent High Court judgment that found that Personal Independent Payment regulations were discriminatory towards people with mental health conditions.

That judgment now means that 1.6 million people will have their PIP assessments reviewed.

It drew on Article 19 of the UNCRPD to interpret Article 14 of the European Convention on Human Rights concerning discrimination demonstrating that the Convention can have effect in our domestic courts, even if indirect, and help produce immediate, tangible outcomes like this.

We should see the concluding observations as helpful confirmation but we shouldn’t rely on them or be limited by them in setting our own agenda for the future

The Committee plays an important role and people have gained a great deal from feeling it is on their side.

But I fear that support is going to begin to feel rather hollow if people continue to focus so much expectation on what it can actually do for them in practical terms.

The drafters of the Convention knew this.

It’s why Article 33 of the Convention was included.

It explicitly strives to domesticate the processes of implementation and monitoring, via a dialogue between government, a framework to protect, promote and monitor implementation and with civil society especially DPOs.

As Professor Gerard Quinn continually reminds us, international human rights law is not self-executing: It requires concerted action to transmit and translate it into the domestic sphere.

So, our focus should be on domestic levers first: at law, policy makers, legislators, on tooling up disabled people and their organisations and as I have already said, on enlisting public support.

That way we can begin to breath life into the Convention as a living instrument.

And finally, we must continually remind ourselves of the principles in the Convention and of the paradigm shift it envisions in the way societies respond to disabled people.

To some extent the Convention is already having that effect in the UK.

We have seen over the past decade a decisive shift from a ‘civil rights’ approach to disability rights – focused overwhelmingly on anti-discrimination law – to a far more broader human rights approach, encompassing not only non discrimination in areas like employment, education and goods and services but also social protection, legal capacity, political participation and independent living for example.

This is progress.

But at the same time austerity has bred insecurity, and insecurity leans people towards conservatism.

Too often it feels as though people are reaching for the ‘system restore’ button rather than charting a future path.

Campaigns focus on protecting or restoring the old ways, rather than promoting new ones.

We want more spending on social care, despite social care not being effective at supporting independent living.

We want to amend the Work Capability Assessment so that fewer people are judged fit to work, despite spending decades arguing that disability is not a barrier to work.

Speaking in 1990, Mike Oliver, midwife of the social model of disability said:

“It is perhaps ironic that many of us spent the 1970s criticising the welfare state, only to find that these arguments were built upon and taken much further by a government determined to reduce state expenditure. Consequently we spent the 1980s defending what we had previously attacked. In sum, we defended the indefensible and I do not propose to spend the 1990s doing the same.”

Are we not often doing exactly the same today? Isn’t it time to get back on the front foot and advance an agenda for the future?

So, in sum, I would advise that our next steps should involve:

Looking forwards, not back, guided by a deep understanding of and commitment to the principles and articles of the Convention

Advancing solutions, not just highlighting problems

Putting disability at the heart of the debates shaping our collective future

Developing a positive story of change

And striving to ensure that hope wins over despair.

On economic, social and cultural rights we need to look carefully before we leap

In the English human rights community people are having conversations about economic, social and cultural that existed only in the margins a decade ago. An alignment of events have brought them to the fore: the fallout of the economic crash of 2008 (and interrogation of its causes) especially austerity; the effective advocacy of new civil society actors, such as Just Fair and the discovery by existing ones of human rights standards and instruments such as the UNCRPD; Brexit and the perceived threat to rights of leaving the EU, coupled with an apparent cessation on hostilities towards the Human Rights Act and ECHR meaning people are talking more about the future; and one event in particular: Grenfell and the debates about socioeconomic inequality that have surrounded it.  Moreover, some hypothesise that a more expansive focus on economic, social and cultural rights – rather than a limited focus on civil and political rights – will help tackle the toxic narrative that has befallen human rights in the UK over the past 15 years or so.

Various ideas abound about how economic, social and cultural rights could be given greater effect in the UK, including by seeking implementation of Section 1 of the Equality Act 2010 (which placed a duty on public bodies to have due regard to socio-economic status when make decisions), through models of incorporating the international human rights treaties to which the UK is Party into UK law, or by action to ensure civil society organisations, legal professionals and others are better versed in international human rights law and supported to harness their existing potential.  Scotland’s First Minister has recently established an independent advisory group to explore options for developing Scotland’s law, while announcing a new Social Security Commission that assess any social security proposals by the Scottish Government for compliance with human rights law.

As for the image of human rights, certainly, aligning the human rights debate with people’s everyday material concerns about the roof over their heads, the food on their table, heating their homes, educating their children and getting treatment when they’re sick intuitively offers some opportunities to make human rights more relevant to people than less tangible things such as freedom of speech, fair trial or private and family life.   Research on understanding of human rights has found that people on the whole don’t divide rights into ‘civil and political’ and ‘economic and social’ in any case: asked to list the most important human rights, people will place health and education alongside freedom of speech for example. As developments in Scotland and Northern Ireland show, painting human rights on a bigger canvass also provides an opportunity to mobilise a broader cross section of civil society than has been possible in mobilising defence of the Human Rights Act in England. It also offers a bridge between what have historically been very separate evolutionary paths of equality and human rights activism, policy, law and practice in the UK.

So, so far let’s go for it. But…

….If the recent prompt for this has been Grenfell, set in the broader liberal head spin that is Brexit, we need to think this through very very carefully before pursuing any specific course of action.

At the heart of negative public attitudes to human rights is not people’s opposition to them in principle, but a prevailing sense that the laws to protect them unfairly advantage ‘other’ people and often people who want to harm us, or who are not believed to have behaved responsibility.  We are told human rights are universal, but they do not appear to be.   It is this growing dislocation from intuitive ideas of fairness that provides common ground in the challenges faced by advocates for human rights and for social security for example: namely, it is widely believed that some people are enjoying a free ride at the expense of others, playing the system and not giving anything back and that nationality no longer guarantees prioritization whether in respect of legal protection or access to public goods. These are the ingredients of people’s sense of having been ‘left behind’ and which underly support for the populist calls to ‘Take back control’ or to ‘Make America Great Again’.

There is a clear and growing need to address inequalities in power, material resources and opportunities not just for the so called ‘left behind’ but for the health of society as a whole. But I would hesitate to suggest that human rights presently offer the best way forward.

Would justiciable economic, cultural and social rights overcome a prevailing view that human rights benefit ‘other people’ or reinforce it as law and practice almost inevitably focuses on the most marginalised?  A 2010 report by the Fabian Society reported that ‘Perhaps counter-intuitively, welfare systems which are focused on addressing ‘poverty’ do worse in poverty outcomes than broadly-based systems which aim to reflect a shared sense of citizenship across society.’ Human rights are rooted in the idea of our shared humanity, but they do not so easily speak to ideas of shared citizenship, which encompasses our shared national identity, culture, traditions, codes of fairness, behaviour and reciprocity and so on. Often they are seen to undermine it.   The NHS is a cherished institution because it is emblematic of who we are, as much as what it provides.  It is regarded as universal because it is experienced as universal, not because somebody tells us so.  Would a human rights approach to such things aid or undermine the ‘social glue’ necessary to sustain collective investment in public resources?

This is why, for English human rights advocates reasonably and rightly concerned about socioeconomic rights and inequality, I would venture that the right moment for pursuing greater legal effect for Economic, Social and Cultural Rights is not now and in any case the wrong focus in response to Grenfell and Brexit at this time.  Instead, I would propose focusing in the immediate term on two challenges:

• How to ‘democratise’ the power that human rights already provides
• How to secure respect for human rights in the world of ‘distributed accountability’

There has been much said about human rights and Grenfell, but is has almost exclusively focused on either the obligations of public bodies to protect life, or on the rights of victims and relatives to secure redress after such a catastrophe. Yet in the days and weeks after the fire we heard countless stories of residents groups having sought to secure action on fire safety in the building prior to the fire and facing obstruction including legal action in response. What role was human rights playing here in empowering the residents to challenge power? And if it wasn’t, why wasn’t it? These are the true ‘small places, close to home, too small to see on any map of the world’, with people struggling to secure change in the months and years before the horror unfolded and the world’s media arrived.

We need an ‘early action’ approach to human rights, with human rights advocates there before the next catastrophe unfolds, helping to prevent it from happening by tooling everyday people up with the knowledge and creative ways to take on authority using human rights. That might include support to utilise both the Human Rights Act and other human rights instruments related to economic, social and cultural rights. But without action to spread the power of human rights, the clamour for more law will just be seen as an attempt to further advance the interests of ‘people who are not us’, adding to rather than helping overcome people’s sense of alienation and powerlessness.

Ensuring human rights give power to everyday people in everyday situations also demands attention to the increasingly complex world of outsourcing, contracting and sub-contracting – a central feature of Grenfell, social housing and other public services. Accountability can become so diffused that even the various actors involved can struggle to command action. In a world where the State has an increasingly back seat in delivery, rethinking how human rights accountability needs to work in such complex systems is imperative, and a so far missing link in the debates around business and human rights.

I was reflecting recently how when the Human Rights Act was first introduced it was positioned not a moment of great constitutional reform, but as a redrawing of the relationship between citizens and public services, linked to wider public service reform agendas such as personalisation. In sum, human rights was positioned as restoring power to everyday people to take back control over their lives. If we want to learn the lesson of Brexit and honour the victims of Grenfell, it’s to this task that I believe our focus and energy should first and foremost return.

 

 

 

 

 

The right to be human

I’m returning from Brussels as I write this, having been to the European Parliament to help launch a report I co-authored for Community Living in Europe: Structural Funds Watch called ‘Opening up communities, closing down institutions – harnessing the European Structural and Investment Funds.’ In a nutshell, the report looks at the effect of EU funding on bringing about the transition from institutional care to community based living, based on evidence supplied by people and organisations across a number of EU Member States.

So far, so gobbledygook…. And therein lies a big part of the problem for this agenda: it’s mired in elitist policy wonkisms that simultaneously fail to articulate our goals clearly or command broad public support for them (and I am just as guilty as everyone else when it comes to indulging in such policy-speak).   So it was with great pleasure to listen to two self-advocates at the beginning of the event talking from the perspectives of children and young people who have been incarcerated in large orphanages and institutions.   How about this for cutting through the bullshit:

‘In a home of 100 children you are nobody’

Can anyone offer a better way to convey the way congregate living robs people of their selfhood and identity, and hence dignity? Or, how about this for a metaphor to explain why family life is so important:

‘The love of a family is like a suit of armour that helps you through life’s struggles’

And:

‘We should be investing in family life as though investing in a blacksmith to make this suit of armour.’

Can you think of a better way to articulate the need to invest in social infrastructure rather than physical infrastructure in order to make community living a reality?

We have a weird habit in the world of human rights of erasing the human in the language we use. What is deinstitutionalisation really about? It’s about identity, security, belonging, having dreams and being able to pursue them and it’s about the power of love.

In sum, it’s about being human. Ensuring everyone can be is the only true measure of success.

 

 

 

 

From civil rights to human rights? Has UK disability rights been reframed since 2010?

I’ve written frequently over the past 5-6 years about what I’ve regarded as the dangers inherent to confining disability rights activism to an anti-austerity frame. This is not because I am pro-austerity or believe that it should go unchallenged – quite the opposite. It’s because I fear doing so in such narrow terms risks reinforcing prejudices that disabled people are passive objects of charity, State or otherwise and that disability is synonymous only with ‘welfare spending’.  That, in turn, will, I believe, further undermine political and wider public support for the social change necessary to build an inclusive society.

In response to what I have argued, some people countered that the disability equality agenda of the 1990s and 2000s, which focused on ‘full civil rights’ and ‘non discrimination’, failed to account for the support that some disabled people required to take up such opportunities, and moreover, its ambition was in some cases beyond the reach of some people, especially those with chronic health conditions.   In sum, it’s been argued that some people are dependent on social security benefits to achieve inclusion and for basic survival and that we shouldn’t be helping to sustain narratives that deny this reality.   Moreover, without adequate food, shelter and support with day to day living we rob people of the hope and agency necessary to make equality policies work.   As the late Sir Bert Massie said of under-investment in social care back in 2006:

‘some disabled people have been invited to look up at the stars while having the rug pulled from beneath them.’

This latterly caused me to identify the ‘fault-line’ in the disability rights activism of that period as being its neglect of economic and social rights. I quoted the anti-apartheid campaigner and South African Supreme Court judge Albie Sachs who said of the inclusion of economic and social rights in the South African constitution:

‘it would have been ironical indeed had the struggle (against Apartheid) ended up doing little more than to guarantee people dying of hunger the inalienable right to use their last breath freely to curse the government.’

This fundamental weakness in UK disability rights meant that when austerity arrived we had little by way of a disability rights-based narrative or tools with which to respond and resist.  For example, when Jenny Morris and I worked as Specialist Advisers to the Joint Committee on Human Rights on its inquiry into independent living in 2011/12 we found very few of the 100+ witnesses referenced human rights when giving evidence on the impact of reforms and spending cuts.  This was why we spent so much time in the final report explaining what the right to live independently and to be included in the community (Article 19 CRPD) meant.

As austerity gained pace, this weakness quite naturally left the door open to narratives of vulnerability and victimhood to fill the void.  By way of illustration, to challenge disability discrimination in the mid-1990s and early 2000s we sought to cultivate public opposition to the idea that a person with mental health problems could be deemed incapable of being a productive employee, emphasising people’s strengths and potential. To challenge welfare reform since 2010, some campaigners seek to cultivate public opposition to the idea that people with mental health problems are capable of work, emphasising their fragility and lack of productive potential.  Both are calibrated to achieve legitimate goals in their own right: to challenge discrimination and to confront punitive welfare reforms. But they rely on entirely contradictory narratives concerning the most appropriate response to disability.

Recently, I’ve been writing a journal article with Liz Sayce that seeks to trace the impact that the UN Convention on the Rights of Persons with Disabilities has had in the UK since it was ratified in 2009.   It seems that the Convention – and human rights as a framing for disability rights advocacy – has grown in stature during a period that many regard as one of regression in the lived experience of many disabled people.   That might simply be because the Convention’s ratification coincided with the financial crash and emergence of the austerity era. Or because, having exhausted domestic legal and political remedies, activists turned not to the Convention but to the Committee on the Rights of Persons with Disabilities for support as a place of last resort. But I think the clue to the ascendance of ‘human rights’ within disability rights activism is also captured well by Theresa Deneger, the current chair of the UN Committee on the Rights of Persons with Disabilities in an article on the ‘Human Rights Approach to Disability’:

‘The social model of disability served as a stepping-stone in struggles for civil rights reform and anti-discrimination laws in many countries….…Within disability studies,  this rights-based approach in disability was characterized as a tool for stipulating citizenship and equality. To demand anti-discrimination legislation was a logical consequence of analyzing disability as the product of inequality and discrimination….

….The focus on rights was perceived as an alternative to needs-based social policy which portrayed disabled persons as dependent welfare recipients. Thus, anti-discrimination legislation was seen as a remedy to a welfare approach to disability. Disabled persons could thus be described as citizens with equal rights….…The shift from welfare legislation to civil rights legislation in disability policy became the focus of disability movements in many countries. ‘We want rights not charity’ was and still is a slogan to be heard around the world from disability rights activists….

…However, anti-discrimination law can only be seen as a partial solution to the problem. Even in a society without barriers and other forms of discrimination, people need social, economic and cultural rights. People need shelter, education, employment or cultural participation. This is true for all human beings, and thus for disabled persons. However, because impairment often leads to needs for assistance, it is especially true that disabled persons need more than civil and political rights….

 Degener makes the case for a human rights-based approach on the basis that:

‘….while the social model (of disability) supports anti-discrimination policy and civil rights reforms, the human rights model of disability is more comprehensive in that it encompasses both sets of human rights, civil and political as well as economic, social and cultural rights.’

The historic absence of human rights from the UK’s equality and social justice landscape was not unique to disability rights. Writing about the development of equality law and practice in the UK Fredman (2003) noted

‘in most jurisdictions, equality is firmly embedded within human rights law. By contrast, anti-discrimination law in Britain has emerged from labour law, and pre-dates human rights law by a long way…..

….it might have been expected that this would change with the incorporation (via the Human Rights Act 1998) of the ECHR. However, little attempt has been made to build bridges between the two jurisdictions.

Yet within disability rights, this appears to have changed dramatically.

Where the homegrown disability rights narrative had pushed questions of social security to the periphery, the UNCRPD and human rights have offered a rights-framework to encompass it, which in turn has grown in salience and stature because of austerity. It appears as a consequence that UK disability rights has shifted its framing from pursuing ‘full civil rights’ to seeking respect for ‘human rights’ since 2009.

However, by sometimes focusing on economic, social and cultural rights in isolation, under the rubric of anti-austerity, the problems that had led disability campaigners in the past towards anti-discrimination/civil rights framing may persist. Where the ‘civil rights’ frame may have neglected basic material needs in its focus on freedom and opportunity, we today risk cultivating a human rights approach that neglects freedom and opportunity by concerning itself only with basic material needs.

Doing so could turn back the clock, repeating what leading figures of Britain’s disability rights approach, such as Vik Finkelstein and Mike Oliver, warned of in the 1970s and 1980s. In particular, by focusing overwhelmingly on what Finkelstein termed ‘State Charity’ rather than full social inclusion – even with a human rights frame – it risks once again confirming societies view of disabled people as ‘passive objects’, not citizens and offers little by way of a vision for inclusion in which an empowering welfare state can be articulated and pursued.

There are also real risks that anti-austerity campaigns neglect to attend to the qualitative dimensions of welfare and social policies, focusing only on how much public money is spent, not how well it is spent to support choice, control and participation. Mike Oliver noted how in similar times gone by, disability campaigners ended up ‘defending the indefensible’ in the face of cuts, through seeking to maintain or restore policies and systems which in better times they had hitherto sought to reform (an example in recent times would be the defence of sheltered employment).

It also includes the question of who provides services. Anti-austerity campaigners, often ‘hard left’ aligned, seem to unquestioningly follow the public = good, private = bad doctrine, and be signed up to mass-nationalisation of services such as social care promised by Jeremy Corbyn without any evident attention to the capacity of a State monopolies to respect disabled people’s rights to choice and control (for which there are plenty of warnings from history if people would only take off their Loachian rose-tinted spectacles to see). While so-called ‘neoliberalism’ has become the bogeyman of anti-austerity campaigners, times past and present show, even within the doctrine of ‘from each according to his abilities, to each according to his needs’ discrimination towards disabled people can persist and fundamental human rights can be neglected. If in doubt, check out the ongoing scale of institutionalisation of disabled people in central and eastern Europe and the Baltic states or the situation of disabled people today in China. Poverty clearly plays a significant role, but lack of respect for civil and political rights paves the way to these ‘solutions’.  It would be extremely dangerous for disability rights campaigners to align with those who appear to wish to ignore the left’s own critique of the State, for disabled people’s human rights have consistently been the cost of this neglect.

Deneger’s answer to this is that:

‘While welfare policies and laws in the past have failed to acknowledge and empower disabled persons as citizens, laws on personal assistance services or personal budgets proved that even classical social laws can give choice and control to disabled persons.’

That is to say, it is ‘independent living’ as an idea that continues to offer the best way of fusing civil and political rights to choice, control and participation with economic, social and cultural rights to housing, supports and community based services, underpinned by common framework of principles including individual dignity, autonomy, equality and non discrimination.   As a unifying idea, it also offers a bridge between the civil rights campaigns of the 80s and 90s and the anti-austerity campaigns of today. It demands that we attend to the fault-line in disability rights activism that was so nakedly exposed by austerity, while challenging the neglect of civil and political rights by some anti-austerity campaigners.

On the question of framing, we need to avoid reinforcing negative frames which undermine the achievement of our goals or which alienate political and public support.  We need to learn from other successful agents of social change, such as the campaign for marriage equality, which consciously reframed its goal by stopping talking about ‘same-sex partnerships’ or ‘gay marriage’ because of the ‘othering’ effect of such language on public perceptions.  By resituating their goals within the frame of ‘marriage equality’ opposition diminished, support grew and change began to accelerate.   ‘Anti-austerity’ may also have such an othering effect where disabled people are concerned.  It also seems likely to convey to many ideas of unaffordability (living beyond our means) rather than unfairness.  And because it is clearly politically partisan as an advocacy frame it risks alienating support from conservatives and centre-left voters (who are the majority).  While ultimately an empirical question, requiring research, it might be far more productive to avoid talking about ‘ending austerity’ at all and instead to talk about ‘increasing investment.’

Focusing on investment in independent living also offers a much-needed thing, too often missing from oppositional campaigns and resistance movements, and something which has been a core feature of all successful disability rights campaigns: a vision of a better future.

 

 

 

 

 

 

 

 

 

 

 

 

 

Don’t let hate crime awareness week be hate crime disinformation week

 

The latest Home Office Hate Crime statistics are out,  so its time for my now traditional annual diatribe against the misinterpretation, abuse and misuse of this information.

First of all, all hate crime, including disability hate crime, is an abomination. One hate crime is one too many. As an expression of more widely held prejudices it reminds us how far we have to go to foster equality and respect for human rights. We must do all we can to rid our society of such vile, oppressive behavior.   That means understanding why it happens, taking action to prevent it, ensuring people who experience it recognise and report it, ensuring that the police and others respect and listen to people when they do, investigate alleged crimes thoroughly and with the Crown Prosecution Service ensure perpetrators are punished for their crimes. It means ensuring government, the media or others avoid and are deterred from cultivating social conditions which are either permissive of such behaviours or which motivate them.

Disability hate crime wasn’t really recognised as such in the UK before the Criminal Justice Act 2003. The late Nick Russell joined forces with Stonewall and the Disability Rights Commission to secure s146 of the Act, which for the first time recognised hostility towards people on grounds of disability or sexual orientation as an ‘aggravating factor’ to be taken account of in sentencing.   It was several years later that Disability Hate Crime came to be recorded by the police, the Crown Prosecution Service (CPS) and in the Crime Survey. My team at the Disability Rights Commission played a crucial role, as did key people such as Paul Giannassi, Joanna Perry, Mark Brooks, Anne Novis, Stephen Brookes and Katherine Quarmby.   We picked up the thread when the EHRC took over from the DRC, first with seminal research into disabled people’s experiences of violence and hostility and then the Disability Related Harassment Inquiry.

Since then there have been various drives by government, police forces and the CPS, often working with disabled people’s organisations to drive up reporting and to ensure recording of disability hate crime.  Unsurprisingly, the number of disability hate crimes recorded by the police has as a result increased since it was first recorded in 2007, and it is these recorded crimes that the Home Office reports on. They are though but a drop in the ocean. Over 90% of disability hate crime incidents still go unreported or recorded. Yet the way these statistics are reported manages both to obscure this fact, whilst giving a completely misleading and harmful picture of what is really happening.

In the past 24 hours it has been reported – by disability charities including Leonard Cheshire, the BBC and others – that disability hate crime has risen by 53% in the past year and that such crimes against children have increased by 150%. Yet these alarming figures concern the numbers of such crimes recorded by the police, not overall incidence.   The most recent analysis of incidence by EHRC actually suggests incidence has declined since 2011 from an average of 72000 disability hate crime incidents a year between 2007-11, to 56,000 per year between 2011-12 to 2013-14, reflecting a decline in crime overall.

As I tweeted last week, disability hate crime is one of those issues where things can look worse at the very point they are improving. For example, in March 2016 the Metropolitan Police and Inclusion London launched Disability Hate Crime Matters which aimed to improve the identification, investigation and response by officers to disability hate crime (DHC) through awareness raising across the force.   In March 2017 the Independent Newspaper reported a ‘huge rise’ in Hate Crime across London, and that ‘Numbers of disability hate victims have increased by 216 per cent in the last year alone, up from 251 in 2015-16 to 794 in 2016-17.’  Of course some of this rise may be down to increased incidence, but much of it is more likely a result of the success of the efforts of the Met and Inclusion London.

So, incidence of disability hate crime appears to be going down, while reporting to and recording by the police is continuing to go up.   That suggests we are beginning to get a handle on it, which one might hope and expect a decade or so on.   But it is incredibly slow progress, which really should be the focus of the story.   In the week that women on social media have used the hashtag #metoo to convey the scale of sexual harassment and abuse, these statistics should remind us how so many disabled people continue to simply live with such behaviour and we should recommit to ensuring people do not suffer in silence.

The second problem I’ve written about previously is the misappropriation of disability hate crime for other political ends. Intuitively I share the belief that rhetoric surrounding welfare reform has made permissive and indeed fostered a hostile climate towards benefit claimants and I have read enough personal testimonies of people experiencing hostility that they regarded as being connected to presumptions about their benefit claimant status.   But the quote below from Linda Burnip, which appeared in the now apparently-regulated-by-IMPRESS online journal The Canary has absolutely no evidential basis whatsoever:

‘It is very sad to see that even disabled children are now viewed as unworthy and subject to abuse from the public. This is the direct responsibility of a callous and uncaring government who from 2010 onward has dedicated itself to promoting the scrounger rhetoric in relation to disabled people, leading to a massive increase in hate crimes.’

As I have already explained, there has not been a ‘massive increase in hate crimes’ there has been a decline, according to official crime statistics, and that decline coincides the very period Burnip is referring to. If so called scrounger rhetoric was so central a cause of disability hate crime, one might at least expect a ‘blip’ coinciding the period before the Welfare Reform Act 2012, just as the latest Home Office statistic release reports a blip in racial and religiously motivated crime around the time of the EU referendum. Yet there is nothing in the overall incidence or stats on reporting of Disability Hate Crime to indicate this.   Moreover, there was nothing in the stories of disabled children’s experience of hate crime covered by the BBC linking it to so-called scrounger rhetoric either.   This did not stop Steve Topple from the Canary tweeting that the ‘biggest rise’ in disability hate crime was for disabled people, accompanied by an image of a person in a wheelchair being thrown off a cliff and the DWP’s logo. When I challenged and suggested he was abusing and exploiting the statistics for politics he replied that I was someone who ‘would prefer disability not to be an inherently political issue, when it is’ adding with a charming flourish ‘Bored of your trolling. Do fuck off.’   Disability hate crime is a political issue, just as welfare reform is a political issue. It’s just that they’re not the same political issue.

So I will fuck off in a moment. But before doing so, I’ll explain why I believe this misinterpretation, disinformation and misappropriation needs to end. First, because it causes alarm and needlessly increases the fear of crime, which evidence shows has a hugely negative impact on people’s lives as people take steps to avoid it, like never leaving the house at night. But perhaps more importantly because it is failing past, present and future victims of disability hate crime to obscure the facts, divert people from the real problems and to misdiagnose the causes in the pursuit of other political agendas.

So lets actually become aware this hate crime awareness week and really get a handle on eradicating the scourge of disability hate crime.

Bon voyage, Sir Bert

I knew Sir Bert Massie, who sadly passed away yesterday morning, for about a quarter of a century. I first encountered him as Chief Executive of RADAR when he was campaigning for what became the Disability Discrimination Act, for accessible transport and – critically – for accessible housing. Then, somewhat naturally, Bert became Chair of the Disability Rights Commission, leading several years of largely unbroken progress on disability rights.   I joined the policy team there in 2001 and became Head of Policy in 2004. It was only then that I got to know and to learn hugely from Bert the man: his history, what drove him and how he did business. Our paths then diverged for several years before I received a call from him while I was on holiday in 2013, asking if I’d join a commission on disability and poverty which the Labour Party had asked him to Chair. I didn’t have to think about it for long. Both before and afterwards he supported and encouraged me and I’ll be forever grateful.

Born to a working class family in Merseyside, Bert contracted Polio and spent much of his childhood in and out of hospitals and special schools. He left school without qualifications, but latterly took classes – which he persauded local nuns to teach him as no schools or colleges were accessible – passing his O levels before going on to study for his A levels at a specialist college. He graduated from Liverpool Polytechnic before completing a Certificate on Social Work at Manchester Polytechnic.  Many people claim to have pulled themselves up by their bootstraps – his was the real deal.

This early life clearly underscored his outlook, attitude and approach. He never gave up imagining the world could be a better place for disabled people. At the same time he was a realist and a gradualist rather than a revolutionary, though this was driven by a constant itching for progress rather than complacency with the status quo. I just don’t think Bert believed that there was a ‘magic bullet’ in terms of an ideology, single piece of law or approach that would solve all the world’s ills (and time is proving him right). A consummate negotiator, he was able to work across political party lines with a deep understanding of how politics and government worked: do deals; support the civil servants; become confidante to the Minister.   I’ll never forget the way Bert wheeled himself into position to obstruct Tony Blair’s path to his conference speech, securing a handshake and a ‘hello Bert’ in front of the world’s TV cameras before Blair was able to move on.  That same operator that secured an education from nuns secured countless commitments from some of the most senior and influential figures of the past 50 years.

Sadly, this approach would see some disability activists cast Bert as being too cosy with government. But as any Minister will tell you, that ‘cosiness’ came with a price and Bert’s legacy is intact.

Despite being hugely well connected, Bert remained rooted in the real world. I’ve never seen him more relaxed and at home than in his native Merseyside where we met as the Labour Disability and Poverty Commission. He would engage in the detail of policy, think and act strategically and politically at the highest levels of society but he was always driven by one thing only – the wellbeing of disabled people. This is why, when some disability activists saw him as the enemy, many more regarded him as a folk hero – as someone forever one of them and on their side.   Of course that ‘folksiness’ would sometimes collide with the modern world. Let’s just say Bert could be a man of his generation from time to time….

As for those who doubted Bert’s radicalism, I’ll end with a story about the Labour Disability and Poverty Commission.   We had one meeting at Portcullis House in Westminster where we were greeted by Rachel Reeves, then Shadow Work and Pensions Minister.   As Rachel removed the cellophane from our sandwiches, she repeated very clearly that our terms of reference meant that we should not put forward proposals that exceeded current spending levels.   Of course Bert agreed politely, but as soon as she was gone he was having none of it believing Labour had to challenge the doctrine of austerity and I imagine knowing deep down that the austerity straitjacket would eventual loosen. While our final recommendations included ideas for reducing disability-related costs at source and for making better use of existing resources, slap bang in the middle was a proposal for a new ‘Disability Costs Allowance’ to replace PIP – an idea Bert brought to the first meeting and which frankly was going to be in the final report no matter what, reflecting as it did a lifetime of campaigning. This had a price tag of £Billions and perhaps unsurprisingly the Labour Party sank the report, casting it as little more than a consultation response, despite having commissioned Bert to produce it.

Time will tell whether his idea ever comes to fruition (and I hope Labour might honour Bert’s memory by taking another look), but Bert made very clear his rationale for ignoring Reeves’ advice:

‘We’ve been given this opportunity and we just can’t let disabled people down.’