this post was submitted on 13 Nov 2023
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A Boring Dystopia

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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.

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[–] [email protected] 33 points 1 year ago* (last edited 1 year ago) (2 children)

I love it when the ~~DWP~~ Aktion T4 question if I'm still autistic or not. Believe me, I wish I could stop being autistic and not have anxiety over very normal things and sudden changes. Even the initial application for PIP or DLA was a nightmare as an uncaring system was not convinced I was autistic despite all of the evidence provided by my GP. They very nearly ran me out of money when I got sanctioned without realising it, followed by a year of further paperwork battles as the ~~DWP~~ Aktion T4 continued to deliberately misinterpret everything.

Then there's a lot of anti-welfare crap swirling around the internet, so I sometimes feel guilty about claiming anything even though I know it's legitimate. People are salivating at the idea of the DWP having enforcement powers, checking where you go on holiday (even though a flight can cost less than a train ticket) and other intrusive measures.

Currently I'm at risk of losing my ESA since they decided to question my autism again and want to do a phone interview, which is exactly what I struggle with, so thank god there's people who can support me with that call. Honestly, if I had to fight the DWP alone, I probably would have lost all of my benefits and offed myself by now. It's tough enough even with my really good support network.

[–] [email protected] 24 points 1 year ago (2 children)

You know what the most ironic thing is? They do this under the guise of rooting out benefit cheats but if anything they just train people into being capable of benefit fraud. Because you have to think like a benefit fraud just to get what they publicly say you are due.

[–] [email protected] 12 points 1 year ago (3 children)

Exactly. I sometimes grapple with an urge to slightly exaggerate my issues to make sure I get a fair assessment.

[–] [email protected] 15 points 1 year ago

A benefits adviser who was supporting me a while back gave me some really good pointers to consider when answering these forms:
Can you do X safely and repeatedly?
Can you do X on bad days?
If the answer to either of those is no, the answer to the question is a no.
I know it's hard not to because I do it myself, but try not to feel the guilt they try to force on us. We are NOT the ones who are a drain on society, those who frame us as such are. We deserve to exist, and if to do that we need to claim benefits, then that's that, and it's nothing to feel guilty or ashamed of.

[–] [email protected] 9 points 1 year ago* (last edited 1 year ago)

Honestly, just do it. Just recount your worst days. The DWP are looking for reasons to deny you, you don't want to give them one by recounting a less-than-worse day.

I'm autistic too, and that's exactly what I did.

[–] [email protected] 3 points 1 year ago

As long as you can do it without an undue risk of getting caught, I see no reason not to. It sounds like you've already been gaslit into feeling guilty for asking for what's owed to you, so I assume you're actually downplaying your symptoms when you think you're reporting them accurately.

[–] [email protected] 7 points 1 year ago

That's a good way of describing it. I've ibd and the nurse has told me to tell them how things are when it's at its worst.

[–] [email protected] 10 points 1 year ago

Well said, and I'm sorry you're having to go through this shit too, but I'm glad to hear you have support, I'm in the same boat - never would have managed it without that help.

The link you shared reminded me of this I shared not long ago - https://www.benefitsandwork.co.uk/news/dwp-considers-powers-of-arrest,-seizure-and-collecting-information-on-where-claimants-spend-money

It really is appalling and enraging the levels of privacy invasion and lets be honest- - humiliation we're subjected to for the crime of being disabled, while those in power get away with literally robbing the entirety of society.

[–] [email protected] 16 points 1 year ago (4 children)

I mean, that’s great, but why isn’t there a single example in this wall of text? The link to "systemic flaws" leads to a 404 and the text itself remains quite vague.

I’m of course inclined to believe the article but it strikes me as odd that it seems to avoid naming specific things that are supposedly intentionally suicide inducing.

[–] [email protected] 18 points 1 year ago* (last edited 1 year ago) (2 children)

As an ex-brit that was once on British disability benefits, navigating the system can be crazy tricky. It is the kind of thing you need specialist help with and if you don't get it, you can get absolutely screwed. People don't think you need lawyer-like help to get around it but you absolutely do.

One trick they use is that they intentionally ignore the concept of good days and bad days. There are disabilities where you are more capable than other days and less capable on some days too. They ignore this and treat everything you put on the form as stuff you'd be able to do every day of the week. They don't tell you this though, in fact they word it as though they are looking for the most that you are able to do.

[–] [email protected] 15 points 1 year ago (2 children)

I was diagnosed with ibd a couple years ago and I am regularly anemic and I need to get iron infusions as well as having regular tests and appointments. I asked about ibd and pip as it is now and the dude wouldn't understand that I've days where I'm completely incapable of doing anything because I'm bloated, stuck at the toilet as well as fatigued. The specialist nurse who is in charge of my care has told me that with ibd there are periods where you would be ok but it's an unpredictable condition as I might have severe problems for a week and be fine for 2 months

According to the welfare people, I'm clearly fine because my condition is unpredictable.

[–] [email protected] 8 points 1 year ago

There must be some religion that would recognise the DWP as saints for all of the healing miracles that they've performed, I've read stories of amputees being told their limb might (or even has) grow back, conditions people are born with being cured, and from my own personal experience - a degenerative condition the assessor clearly didn't even know, getting better because I'm "still young".

(I am of curse being facetious, the DWP needs abolishing, along with the fascist government and monarchy they exist to provide worker cogs for)

[–] [email protected] 5 points 1 year ago

Damn. People go in expecting to get help but they don't realise until it is too late that they are dealing with a completely hostile system.

[–] [email protected] 9 points 1 year ago

Yup. Never mind that they also ignore GP and specialist evidence in favour of a 10 minute assessment by a barely-medical professional (the first doctor you'll meet via the DWP will be at the tribunal you have to get to after appealing after they've denied you your benefit by default)

[–] [email protected] 9 points 1 year ago (1 children)

I also thought there would be specific examples leading to concluding paragraph.

Anecdotally, I do know someone who is disabled and after he changed his address he stopped receiving payments completely, and it took about 18 months to reestablish payments and every time he talked with someone over those 18 months he had to completely re-explain the situation and how many times he had already changed his address just how they were asking him to within their system and confirmed with the last person that he had talked to that he had changed his address in their system but had not received a single payment since the first time he changed his address.

At the end of it they finally confirmed that he had been missing payments for over a year and they would start trying to reimburse him.

He lives with his brother who works so he wasn't homeless, but if he hadn't had family, then the system could have easily killed him.

[–] [email protected] 4 points 1 year ago (1 children)

I also thought there would be specific examples leading to concluding paragraph.

The article is about a timeline of events, which is linked at the bottom, as well as many other links in the body of the article that lead to much more info and examples, I'm not sure what more they could have done.

As for your anecdote, I can second it, since I had a similar thing happen to me (moved to a new area, had my benefits stopped while they re-assessed me in the new area). This happens due to privatisation and a breaking up of the system so that each area is managed by a different contractor, and they don't really communicate (since none are designed to give the claimant the best outcome, so why would they). I knew my benefits had been stopped and it still took a little over a year to get everything going again (with significant support).

[–] [email protected] 2 points 1 year ago* (last edited 1 year ago) (1 children)

The timeline, behind a five-click-introduction that explains and teaches you about the structure of the timeline itself, is an impersonal wiki list of bureaucratic events that led to a poorly run and maintained welfare system, it is a dry read on a cluttered page.

The article could easily include a couple testimonies or anecdotes to show people reading the article how the poorly run system is affecting real people.

[–] [email protected] 0 points 1 year ago (1 children)

As much as your comment pisses me off, it does have some value, in proving the title perfectly accurate - people need to start listening to disabled people more, because this is obviously an issue for many of you.

The article did include a couple of stories, you just didn't care enough to click through to the examples (or to read a shock horror short introduction to the literal information you are demanding).

And since you clearly don't give enough of a shit to make the effort, neither will I, have a copy pasta and go on with your life of wilful ignorance:

you could have clicked more than one link in the article, and reached this("people’s deaths"), which links to:
https://www.bigissue.com/news/social-justice/dwp-disability-benefits-claimants-fail-whistleblowers/
https://www.bigissue.com/news/social-justice/dwp-disability-benefits-assessors-pressure-ramp-up-numbers/
https://www.bigissue.com/news/social-justice/legacy-benefits-claimant-astonished-judge-justified-discrimination/
https://www.bigissue.com/news/social-justice/dwp-cut-back-my-disability-benefits-feared-homelessness/
All of which contain many other links, and also:
https://www.gov.uk/government/statistics/esa-outcomes-of-work-capability-assessments-including-mandatory-reconsiderations-and-appeals-december-2022/esa-work-capability-assessments-mandatory-reconsiderations-and-appeals-december-2022

Or this("contractors")
which links to:
https://www.bigissue.com/news/social-justice/dwp-disability-benefits-assessments-pip-westminster-debate/
https://www.bigissue.com/news/social-justice/dwp-refused-pip-deducted-universal-credit/

Never mind the timeline the entire article about, which, if you scroll, will provide you with relevant links and information about individual deaths as well as the big picture
https://deathsbywelfare.org/timeline/#mps-refuse-to-question-minister-over-deaths-by-welfare-timeline

All you had to do was give the tiniest of shits, the information is all there.

[–] [email protected] 3 points 1 year ago

My comment has value because of what we know about how people read articles and engage with causes.

If you just want to write a diary, then you can structure it however you like.

If, however, your intention is to raise awareness of a situation or minority, then it behooves you to make it as engaging as it is credibly informative and comprehensive for as wide as audience as possible. If you are actually trying to raise awareness through an article, all of those elements must be satisfied.

This short article contains thirteen links, many of which lead to statistics or bureaucratic processes.

Trying to raise awareness by obligating the reader, who may be learning about this for the first time, to click literally over a dozen links that require further clickthroughs is not going to help engagement with the article or raise awareness and support as much as you apparently think it is.

Neither is being insulting or making assumptions based on your own misapprehension of my comment.

[–] [email protected] 1 points 1 year ago* (last edited 1 year ago)

They are in the linked website?

[–] [email protected] 0 points 1 year ago* (last edited 1 year ago) (1 children)

It takes 2 seconds to search "dwp cause suicide", here, I'll even start you off:

https://www.disabilityrightsuk.org/news/2022/june/dwp-ignored-%E2%80%98hugely-alarming%E2%80%99-research-linked-wca-600-suicides-mps-are-told

E: or you could have clicked more than one link in the article, and reached this("people’s deaths"), which links to:
https://www.bigissue.com/news/social-justice/dwp-disability-benefits-claimants-fail-whistleblowers/
https://www.bigissue.com/news/social-justice/dwp-disability-benefits-assessors-pressure-ramp-up-numbers/
https://www.bigissue.com/news/social-justice/legacy-benefits-claimant-astonished-judge-justified-discrimination/
https://www.bigissue.com/news/social-justice/dwp-cut-back-my-disability-benefits-feared-homelessness/
All of which contain many other links, and also:
https://www.gov.uk/government/statistics/esa-outcomes-of-work-capability-assessments-including-mandatory-reconsiderations-and-appeals-december-2022/esa-work-capability-assessments-mandatory-reconsiderations-and-appeals-december-2022

Or this("contractors")
which links to:
https://www.bigissue.com/news/social-justice/dwp-disability-benefits-assessments-pip-westminster-debate/
https://www.bigissue.com/news/social-justice/dwp-refused-pip-deducted-universal-credit/

Never mind the timeline the entire article about, which, if you scroll, will provide you with relevant links and information about individual deaths as well as the big picture
https://deathsbywelfare.org/timeline/#mps-refuse-to-question-minister-over-deaths-by-welfare-timeline

All you had to do was give the tiniest of shits, the information is all there.

[–] [email protected] 2 points 1 year ago (1 children)

Being less of an ass about it would be nice.

[–] [email protected] 2 points 1 year ago* (last edited 1 year ago) (1 children)

No, you.
E: TL;DR (because we both know you won't)

[–] [email protected] 1 points 1 year ago

You're taking both of those out of context. But I don't find that surprising.

We aren't the "oppressor" here. You're effectively getting upset at students trying to learn and understand.

[–] [email protected] 1 points 10 months ago