A Boring Dystopia

Dr China Mills shares her experiences of pulling together decades of evidence of deaths, protests and failures in the disability benefits system for a new timeline which holds the government to account

Philippa Day took her own life in 2019 after her disability benefits were stopped. Before she died, she told her sister that she knew the assessment system was going to kill her – “she felt that they were pressuring her to kill herself, she felt that she didn’t matter because she was disabled”.

In January 2021, the coroner at the inquest into Philippa’s death found that 28 separate “problems” with the administration of the personal independence payment (PIP) system had contributed to her death – concluding that these were not individual errors by DWP and its private sector contractor Capita and instead that these were systemic flaws.

Disabled people have been campaigning for over a decade about how welfare policies are killing them. As a researcher, who had been looking at the connections between welfare policy and suicide for a number of years, I knew there was so much evidence that connected the UK’s social security system to people’s deaths.

But it was well hidden – in the online equivalent of a building full of grey filing cabinets, in reports with no title and just a number, in responses to freedom of information requests.

In 2021, I asked John Pring, editor of Disability News Service and a disabled journalist, if he’d consider wading through the evidence together and finding a way to put it out into the world. He replied the same day and said yes.

Fast forward almost three years, and many emails later, Healing Justice London is launching the Deaths by Welfare timeline – a massive database of evidence showing how the disability benefits system creates life-threatening policies that lead to disabled people’s deaths.

From an initial draft based on Pring’s decade-long investigations and my own research into welfare reform and suicide, we created a draft timeline.

This was then shared with and added to by three disabled activists, Ellen Clifford, Dolly Sen and Rick Burgess, and welfare rights advisor Nick Dilworth, and then released for public consultation.

Where people’s deaths in the disability benefits system have been investigated, including by the DWP, they are often treated as private, individual cases. Bringing together all these documents into a timeline makes it possible to track patterns.

Patterns of harm that have led to people being left destitute, starving to death, and taking their own lives after encounters with the disability benefits system. These are patterns that remain hidden if we only examine individual ‘cases’. The timeline reveals other patterns too – damning evidence that the DWP, and its contractors, knew about these deaths and yet has repeatedly denied responsibility and refused to make systemic change.

Researchers like me often convince ourselves that we’re objective and removed from our investigations. But the experience of co-creating the timeline has been harrowing, heart-breaking and enraging. It’s the repetition that has worn me down and lodged in my heart – the number of times the government has been warned of harms, even from their own research, and the repetition of harms across so many people who have died.

Like many of us, I used to say that people’s deaths were the outcome of ‘flaws’ and ‘mistakes’ in the system – as though the system just needs tweaking to make it safer. But co-creating the Deaths by Welfare timeline made it frighteningly obvious that harm is much more deeply designed into the welfare system. It’s a feature, not a bug.

Yet the timeline isn’t one of despair – it is bursting with disabled people’s expertise, knowledge, activism, and creativity in resisting the violence of the welfare state. From protesting on the streets, holding up cardboard broken hearts bearing the names of just some of those who have died, to quieter resistance – relentless submission of FOIs and re-analysis of government data. It is threaded through with cross-disability and cross-movement solidarity, and solidarity between bereaved families and disabled people.

For example, in July 2021, when bereaved families write to the work and pensions secretary to demand a public inquiry into benefits-related deaths. And in 2012 and 2021, when Deaf, Disabled and Asylum seeking people came together, as part of the Disability Murals Project, to create a mural highlighting the barriers and state violence disabled asylum seekers face, including exclusion from the welfare system.

While justice means different things to different people, those campaigning for change know the problems lie in DWP systems, and many demand an independent inquiry into benefits-related deaths. Many see justice as coming from beyond the state – in demolishing the current system and creating life-affirming systems, with disabled people at the heart.

We created the Deaths by Welfare timeline as a tool for disability justice movement organising – a resource, a living document, that can move us towards accountability, transformation and justice.

To access the timeline visit www.deathsbywelfare.org

For our podcast episodes (all captioned and translated into BSL) please visit https://healingjusticeldn.org/deaths-by-welfare-project/

Dr China Millsis the Disability Justice Lead at Healing Justice Ldn. She manages the Deaths by Welfare Project, exploring how welfare policies harm people and what can be learned from the strategies of disabled people and bereaved families in fighting for justice.