'Systems Generated Trauma' research

[Eleanor]

Cerebra and the University of Leeds are collaborating on research that seeks to better understand the extent to which parents of disabled children experience trauma as a result of navigating the various social welfare and education systems with which they have to engage.

[...]What is not generally acknowledged, is that many users of public services identify their most traumatising experiences as the way they were treated by the public bodies that they had approached for support.

https://cerebra.org.uk/research/systems-generated-trauma-survey/

 

[rvallee]

Trauma isn't the right word here. Again. The misuse of language in health care is shockingly disastrous. It's as if language itself is stripped of its intended usage.

In some cases there may be something that can be described as traumatic, but the real issue is a far larger mass of needless hardship, of amplified suffering, of taking a bad situation and making it worse in every way possible.

Those systems are built this way on purpose. There are far more people who need help than is available, so those systems place unnecessary burdens, impose hardship on purpose, as an alternative to an efficient resource allocation process. It combines the arbitrariness of an informal system, like charity, but formalizes it in a system of secret rules that is improperly enforced and with more hidden exceptions than there are claimants.

The simple truth is that people in general don't think those protections are necessary. It's common to see and hear opinions that disabled people don't deserve the right to anything, not even to live. It's been on full display since COVID arrived. They mostly seem to assume some sort of separation where those who "truly deserve it" are helped, but I don't think anyone sincerely buys this.

We haven't evolved much beyond our distant ancestors who would abandon the sick and injured when they couldn't carry them, when competition for resources comes into play. Human value is determined almost entirely by the work we can do. We just have more stuff and resources such that some of it takes care of itself, but the motivation simply isn't there. Hell, most health care professionals play along with it, why would the general public be any better at it?

 

[NelliePledge]

Yeah a bad choice of term to get a clear message across.

 

[Tia]

Important subject area but I agree that the word 'trauma' becomes meaningless if used in so many disparate contexts. I've experienced pretty severe shock trauma (nothing to do with ME) and I've experienced frustration and disbelief about the way the system has treated me with ME. I think they are different experiences, not more or less difficult to navigate, but different. There's something about realising that the systems that you thought were there to support you, aren't, which is quite a specific experience I think. It can make you feel powerless and invisible and challenge what you thought you knew about the world you live in. It definitely takes some re-arranging of the way you understand your internal and external world. I think there are similarities with shock trauma but I wonder if there's a better word to use.

 

[V.R.T.]

I'd like to offer a dissenting perspective. I am absolutely traumatised, completely and utterly traumatised by my interactions with the system.

Being gaslit by doctors for years until one gained my trust and ruined my life. Thinking it was my fault. The interactions with people who don't understand. Having to play nice with the DWP knowing that they funded the PACE trial and that they can come down on you like a ton of bricks for minor accounting errors. Constantly having to explain and prove a disability I could mask until the system got a hold of me. Knowing that I am completely disabled because of these people and if a doctor decided to section me I would get even worse. Playing that invasion of the bodysnatchers game of who can i trust. Being treated like an idiot by smug patronising doctors who think you have 'shit life syndrome' and are just a bit feeble really. All very traumatic.

I would imagine being accused of FII and munchausens by proxy etc by schools/council etc would be similarly traumatising.

 

[rvallee]

I'd like to offer a dissenting perspective. I am absolutely traumatised, completely and utterly traumatised by my interactions with the system.

Being gaslit by doctors for years until one gained my trust and ruined my life. Thinking it was my fault. The interactions with people who don't understand. Having to play nice with the DWP knowing that they funded the PACE trial and that they can come down on you like a ton of bricks for minor accounting errors. Constantly having to explain and prove a disability I could mask until the system got a hold of me. Knowing that I am completely disabled because of these people and if a doctor decided to section me I would get even worse. Playing that invasion of the bodysnatchers game of who can i trust. Being treated like an idiot by smug patronising doctors who think you have 'shit life syndrome' and are just a bit feeble really. All very traumatic.

I would imagine being accused of FII and munchausens by proxy etc by schools/council etc would be similarly traumatising.

I don't think it's dissenting. There definitely is a lot of genuine trauma, I just think that the bar should be set much tighter than this. Setting it at the level of trauma is a lot like justifying a preventable disaster was acceptable because no one died, or not everyone did.

We saw the exact same damn thing with COVID all throughout: "it's not the end of the world, people should not be running out in panic". When actually the standard that is written down is the precautionary principle and this is as far as it can get. There is an entire world between apathy and all-out panic, but those seem to be the only levels that are acted on, to the point where the default is to do nothing until things get disastrous. It's a binary tree, not an analog one, in a world where almost everything falls in-between.