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