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A UK charity is offering support for “vulnerable” [pdf, p63] women who have had social services take their children away from them.
But if they want this support, they first have to agree to take contraception to stop them having any more kids. If you were wondering whether Eugenics was still alive and kicking, your question has been answered.
Pause for thought
“Pause” was founded by social worker Sophie Humphreys. Originally operating in Hackney, after the Department for Education got involved in 2015 it expanded [pdf, p13] to six other local authorities. Three years and £millions of lottery and ‘Tampon Tax’ money later, and Pause now operates 20 “practices” across the country.
Essentially, it supports women who have had multiple children removed by social services or other government agencies. It is aimed at women who, if they fell pregnant again, would be at risk of having that child taken away. These are people with complex circumstances, often involving domestic violence, drug or alcohol abuse and other factors.
Pause uses a helpful Venn diagram to show the range of support services it offers. The goal being to “break destructive cycles”:
As a government evaluation of Pause noted [pdf, p6], one of the benchmarks of its success is:
to what extent is the Pause model effective in reducing the numbers of children removed from women’s care?
This evaluation, from 2017, answered its own question – deeming the programme a success. It said [pdf, p7] Pause was:
extremely effective in reducing the number of pregnancies experienced by women during their 18-month interventions. While 2 women became pregnant during their time with Pause, it is estimated that between 21 and 36 pregnancies would have occurred, had the cohort of 125 women not been engaged in the programme. Given the women’s histories, these pregnancies would have been likely to have resulted in removals
So, why is Pause so effective in reducing women’s pregnancies while they are on its programme? A condition of joining the programme is that they have to take contraception during it. When I saw Pause on BBC London News and realised what it was about I was literally gobsmacked.
Women who have gone through the programme, politicians and local government chiefs welcome Pause’s approach and achievements.
For me, it is little more than 21st century Eugenics.
This pseudoscience was popular at the turn of the last century and still holds traction in some quarters today. Essentially, its proponent’s claimed that to ensure the continued progression of us as a species, certain groups in society should not be allowed to reproduce. This was because the idea of ‘nature’ over ‘nurture’ deemed that, as Harold Laski, chair of the Fabian Society from 1946-48 and chair of the Labour Party from 1945-46, noted [pdf, p5]:
Bad stock produces bad stock; the able produce the able; the strong produce the strong.
So, Eugenicists like Laski believed that defective humans should not be allowed to have children. As he noted [pdf, p11] in a 1910 essay:
Extreme emphasis must be laid on the danger of breeding from the unfit at the expense of the fit. Statistical proof of this is ready to hand. In the first place, it is necessary always to bear in mind that half of one generation is produced by a quarter of its predecessor. If this is the case, it is surely of importance that marriages should be selective. If only a small proportion of parents are mentally or physically unfit to take the burden of reproduction upon themselves, the danger of their doing so is obvious.
Laski went on to say [pdf, p12] that of the “pathological stocks”:
The birth-rate among the London mentally defective per family is 7; in Manchester it is 6.3. Dr. Goring has estimated that the fertility in criminal stocks is 6.6; in English deaf-mutes it is 6.2; among albinos it is as high as 5.9. In the families which use the schools for the feeble-minded, the average number of offspring is 7.3. The only conclusion to which these statistics point is that the unfit stock is increasing at the expense of the fit.
“Mentally defective” was a catch-all term, used to describe “idiots”, the “feeble-minded”, the “morally defective”, criminals, unmarried mothers and drunks. In other words, large swathes of the poor.
Fast-forward to 2019, and for me the similarities between Eugenics and the Pause programme are frightening. Yet it appears we as a society have learned nothing from our past errors.
Dressing up the undressable
Pause dresses up its programme as something that:
recognises the women with whom we work as individuals, rather than defining them by the issues and challenges they face. Every Pause programme is driven by the woman and her needs.
It also says that it fosters relationships “where women are valued and respected for who they are”.
Yet this is juxtaposed with forced contraception. To be clear, I’m not saying the people behind the founding of the Pause programme are Eugenicists. Nor am I saying that they are fully aware of the gravity of what they are pushing. But as an organisation, forcing contraception upon certain demographics in society is a slippery slope. One that we’re already on.
Over the past ten years, we have already seen poorer families coerced or economically nudged into not having more children. The two child limit on tax credits is one example of this. As I wrote for The Canary in 2017, other factors at play include:
- Wage increases not keeping pace with inflation since 2007/08.
- Child poverty increasing to one in four children, possibly putting poorer parents off having any more children.
- Benefits being frozen at 2015 rates.
- Health inequality between the richest and poorest remaining “persistent“, according to the government’s own analysis. For example, NHS England found the poorest people had 71% more emergency admissions to hospital than the richest [pdf, p4].
All this, as I wrote, had by 2017 resulted in a fall in the birthrates among the poorest in society, with those considered in the lowest group (the persistently unemployed/sick/disabled people) having fallen by a staggering 33%. Meanwhile, the richest were actually having more children.
This is no coincidence. As we see with Universal Credit, government targeting of the poorest in society to push them to its fringes is intentional. A corporate dystopian future is being ushered in. And Pause’s programme of effectively stopping mothers having children in return for support is part of this.
But there are other worrying aspects of the programme, too.
As the government evaluation from 2017 noted, Pause deals with “vulnerable” women. It said that:
A number of Practitioners reported that supporting women to get a correct diagnosis for previously undiagnosed mental health conditions, and cognitive or physical disabilities, was a high priority, not least because it entitled them to certain benefits. Undiagnosed learning difficulties also made some women vulnerable to various forms of exploitation and abuse (including sexual and financial abuse), as they had little, or no, formal support in place prior to Pause. As a result of practical support to access health services (and also, in some cases, direct advocacy within those services), several women received appropriate diagnoses that entitled them to improved support from health, social care, and housing services…
So essentially, you’re taking women who you’ve already labelled as “vulnerable” and then forced contraception upon them before they’ve even had treatment for physical or mental health conditions? Or women who are survivors of sexual, physical and mental abuse? Also [pdf, p30] learning disabled women have been on the programme. I’d be interested to know what safeguarding was in place to ensure these women were making an informed choice when they entered Pause.
Also of note was that the evaluation found [pdf, p34] that most women had “experienced relatively high levels of domestic violence, compared to women in the general population”. But by contrast it said:
Analyses of alcohol and drug consumption indicate that most Pause women did not fall into established ‘higher risk’ or ‘problematic’ categories. However, the consumption levels of a significant minority either fluctuated into, or remained stable at, a high level.
So, most women on the first trials of Pause were survivors of domestic violence and not addicts. And yet, the programme puts the emphasis on them to change? For me, this is staggering systematic misogyny.
I found nothing on Pause’s website about working towards mothers getting their children back. There is a very telling line that says:
The women who work with Pause are encouraged and supported to take a proactive role in giving their children ‘permission’ to settle and attach to the people looking after them, which can relieve the child’s stress and guilt.
For me, this sets alarm bells ringing. Why, if the Pause programme was so successful, would the ultimate end goal not to be to restore the family unit?
Forced adoption in the UK has historically been a boom industry for local authorities, and we’re one of only three countries in the EU that allows this. The latest craze to sweep the forced adoption industry is cases of Fabricated and Induced Illness (FII), which used to be known as Munchausen Syndrome by Proxy (MSBP). Check out campaign group Fiightback‘s work on this.
Local authorities and third sector organisations run Pause practices. Some councils set targets for adoption numbers. Put two and two together, and you have somewhere like Hull, where the city council runs a Pause programme, and the county council (East Riding of Yorkshire) has historically conducted adoptions in a targeted manner. I can hear the social workers now: ‘C’mon, Billy will be better off with his new family. You’re too damaged. Let him have the life he deserves while you get yourself better and give yourself some time for you, for once…’
Of course, this may all be conjecture from me. Make your own minds up.
The involvement of local authorities raises concerns for me over the whole “voluntary” notion of the Pause programme. If the same organisation which operates social services now also run a rehabilitation programme, any notion of women having a choice over going on it goes out of the window.
Don’t tell me that nefarious social workers haven’t already threatened mothers with the removal of their remaining child/children, or restricted access to their removed children, if they don’t join Pause and take the contraception required. I would imagine its also used as leverage in family courts by now.
It’s the same, dictatorial “nudge” culture that pervades the Department for Work and Pensions’ (DWP) “conditionality” for getting welfare. Things are voluntary on paper. In reality, they’re not. Read Sue Jones’ excellent work on the government’s application of economic nudge theory as a social engineering tool.
Moreover, involving local authorities brings the Pause programme into the political arena. Entrenched views of families who live in certain postcodes predisposes the programme to have made decisions about the women involved before they even start it. Moreover, it is already dealing with women who probably feel society has already left them “out of options”. Just one more ‘nudge’ and they’ll agree to go on the Pause programme.
But with Pause, one of the biggest challenges we face is that many working class people will welcome this.
We’ve had a ‘drip-drip-drip’ of demonising propaganda and ‘divide and conquer’ psychosocial warfare against people on welfare, single mothers, “criminals”, drug users and alcoholics for decades. It was hyper-effective throughout the Thatcher/Major/Blair/Brown/Cameron and May years.
So much so, that one family on a council estate will cheer when another family is evicted, has their children taken away or are sent to prison. I’ve witnessed it firsthand, repeatedly.
It’s what Jeremy Kyle was all about. Only middle class, metropolitan commentators would have called this noxious show ‘poverty porn’ or ‘exploitative’. The real motivation behind Kyle’s horror series was to pit working class people against working class people. Because after all, it was probably working class people claiming welfare that mostly watched it.
‘Look at them!’ we were encouraged to say. ‘Scum! So-and-so round the corner is just like them! I wish the council would do something about them. Kyle would rip them to shreds!’.
Divide and conquer. Bread and circuses.
I mean, even the Spectator said that Kyle was akin to a Roman amphitheatre, ushering in its victims “through separate, colour-coded corridors after being told lies about their opponents’ views so they fought (sometimes physically) for the cameras, not backstage or in makeup”. All while slightly less working class people bayed and cheered.
Moreover, as Faye Davies wrote for flowjournal.org, Kyle was all about cementing class hierarchy:
Kyle is the middle class man, well dressed, directing the discussion from a standing position. This is presented in opposition to the underclass, which presented as sitting down, being spoken to (or more clearly ‘at’) by Kyle. Our middle class representative is the one in control – of information, of audience interaction and of ultimate judgement about social behavior and action/inaction…
In shows such as these there can be no ultimate challenge to the sense that the middle-class authority and judgement should be the one that is dominant.
It’s this Jeremy Kyle culture, coupled with relentless government propaganda, that will allow Pause to continue with very little opposition – even from some of the very communities which should oppose it with every fibre of their being.
Papering over the cracks
We need to think about this and talk about this, particularly because there are other projects that work with this group of women that achieve good results without requiring them to take contraception.
It opens up big ethical questions. I think it’s a fundamental human right being able to have a child.
At best, Pause is an effective establishment tool at papering over the gaping cracks in the foundations of the society we live in. It, knowingly or not, is helping to prop up the very system that causes the problems it deals with, in the first place.
We see this with many ‘solutions’ to human problems. For example, cognitive behavioural therapy (CBT) for the disease myalgic encephalomyelitis (ME), where patients effectively suppress their symptoms by thinking happy thoughts. This makes up for the appalling lack of research funding and keeps the psychiatry industry churning. Or council’s fining people for not recycling properly and London’s Ultra Low Emission Zone (ULEZ), essentially taxing poor people when around 71% of greenhouse gas emissions over the last 30 years have come from just 100 corporations.
The onus is always on the individual; the one who clings onto the bottom rungs of society. It’s your problem. You’re at fault. You need to fix yourself. This is exactly what Pause is doing. As it admits, it:
encourages women to… take responsibility for their actions.
It ignores the embedded problems we have as a species – patriarchy, misogyny, intentional, structural and systematic inequality and hierarchical sociopathy.
It employs the basics of nudge economic theory to change the behaviours of those involved and make them ‘acceptable’ citizens. If it really wanted to (as it claims [pdf, p13]) ‘break destructive cycles’ and allow women to ‘take control of their lives’, it might like to start with some political education about how the system intentionally traps them in their circumstances in the first place.
This is Pause at best.
Complicit in 21st century Eugenics?
At worst, it is complicit in 21st century Eugenics. From Universal Credit, to social cleansing via the gig economy, we are witnessing a return to Victorian-era thinking about poor people. That is, that those who do as they’re told, contribute to the system and eek out their existence without bothering the Establishment and the state, are of use to the system. They have financial value.
Chronically ill, sick and disabled people, those living with mental health issues, single mothers, homeless people, migrants and the ‘work shy’ are of no capital. They are of no use to the system. One UN committee said that successive UK governments has helped create an environment where disabled people are viewed as:
parasites, living on social benefits… and [living on] the taxes of other people…
UN special rapporteur on extreme poverty Philip Alston recently said of successive UK governments that they had “tasked” the DWP:
with designing a digital and sanitized version of the nineteenth century workhouse, made infamous by Charles Dickens…
This is no accident. It has been intentional. So, by endorsing the notion that some women are unfit to be mothers, Pause is playing right into the modern day Eugenicist’s hands.
Either the people behind Pause are middle class do-gooders, blinded by their own self-righteousness, or they are complicit in this disgusting social engineering. I think its probably a combination of both.
I’ve given up writing full time to support my partner Nic, who lives with ME and 14 other diseases and illnesses. You can read about her journey here. Most of her medical treatment now has to be private; a challenge in itself with no income.
THIS PODCAST CONTAINS LANGUAGE AND CONTENT SOME PEOPLE MAY FIND OFFENSIVE. IT ALSO CONTAINS COMMENTARY ON PEOPLE TAKING THEIR OWN LIVES, WHICH SOME LISTENERS MAY FIND DISTRESSING.THE VIEWS EXPRESSED IN THIS EPISODE ARE THE OPINIONS OF THE HOST AND GUESTS. Welcome to series two of #ToppleUncaged!…
The Department for Work and Pensions (DWP) got somewhat of a gift on Wednesday 22 May. It came in the form of a UN report by Philip Alston. And while much of the media has focused on his scathing criticism of successive UK governments, it missed the most important point. It was that Alston effectively gave the DWP a ‘get out of jail free’ card over Universal Credit.
The DWP and the UN
If you are reading this and don’t know much about the controversial new benefit, then you can read The Canary‘s excellent coverage here. In short, Universal Credit rolls six previous welfare payments into one. But controversy has marred it – from increased food bank use to homelessness. Now, and for the fifth time, the UN has got involved.
Alston is a UN special rapporteur on extreme poverty. He visited the UK in November 2018 on a fact-finding mission. His aim was to see how successive governments’ austerity programme, welfare cuts and Universal Credit had affected people. And on 22 May he released his analysis.
You can read it in full below:
14 million people living in poverty, record levels of hunger and homelessness, falling life expectancy for some groups, ever fewer community services, and greatly reduced policing, while access to the courts for lower-income groups has been dramatically rolled back by cuts to legal aid.
He also noted [pdf, p5]:
It might seem to some observers that the Department of Work and Pensions has been tasked with designing a digital and sanitized version of the nineteenth century workhouse, made infamous by Charles Dickens…
But Alston also focused on Universal Credit.
He talked [pdf, p11-14] about the benefit’s “shortcomings”, including:
- Food bank use increasing where the DWP has rolled it out.
- Government treating claimants like “guinea pigs” with its “test and learn” approach.
- Ministers dismissing his concerns.
- The “perverse” and “catastrophic” five-week payment wait.
- “Punitive” sanctions.
- The flaws in Universal Credit being online only.
But he also had some praise for the benefit. He said [pdf, p11]:
Consolidating six different benefits into one makes good sense, in principle.
And he noted [pdf, p4] a:
welcome increase in work allowances, as a consequence of which an estimated 2.4 million households will be better off in 2019,10 and some 200,000 people will rise out of poverty.
But overall, he was highly critical. Problem being, that Alston merely scratched the surface of the catastrophe.
A fault in his argument
By agreeing with the benefit in principle, he fails to understand that Universal Credit is designed to be punitive, vicious and chaotic. This is not government error or failings. And it will not change.
It’s a very concerning flaw in his analysis which in some respects makes much of his other commentary redundant. Here’s why I think that.
A potted history
The overriding notion behind it? That everyone who can do even the smallest bit of work, should. This would, in turn, end welfare ‘dependency’. The thinking was also to reinstall marriage as central to society. All this would herald a return to a Victorian-like era; one where charity and philanthropy support sick, disabled and poor people – not the government.
I continued by explaining that the first major report by the CSJ in 2006, for the opposition Tory Party under David Cameron, outlined that:
poverty and welfare dependency were not due to capitalism’s inequalities. But that poor people and their reliance on welfare existed due to “pathways to poverty”: “family breakdown, education failure, economic dependence, [welfare] indebtedness and addictions”. Solve these, and everyone has “the chance to climb the ladder”, as the report put it…
Central to this was ‘dynamic modelling’, the idea of creating a system that changed people’s behaviour to get them into work (see Kitty Jones’s excellent work on “nudge theory”). Essentially, this meant cutting people’s money so they had no choice but to get a job. Or, in the case of in-work benefits like tax credits, cutting them as people started earning more.
A digital workhouse
We’re back to Alston’s “digital and sanitized” 19th century workhouse analogy again. That is, Universal Credit is the digital equivalent of a workhouse. It will push all the people who were of no use to the system (that is, had little monetary value) under one roof: severely disabled, sick and chronically ill people, those living with mental health issues, single mothers and the ‘work-shy’. All housed in a virtual workhouse. Segregated from the rest of society. A truly dystopian nightmare.
Meanwhile, and as if by magic, to coincide with Alston’s report release the DWP launched it’s heaviest propaganda offensive yet: a massive splash in the Metro:
Of course it’s not magic. It’s part of an ongoing campaign by the DWP to sell its most draconian policy as something positive. Campaigners have been vigorously opposing Universal Credit for a while, now. But if you believe YouGov polling, neither the DWP nor activists are shifting public opinion on the benefit.
The pollster reported in October 2018 that public opinion over Universal Credit was divided:
The confusion and working class division over Universal Credit is evident on our estate.
On the one hand, we have a friend who works in the gig economy and is struggling with the tapering of the earnings floor under the benefit.
Then we have another friend, a single parent of three, who thinks Universal Credit is a great idea. Despite still using food banks they are all for it.
Failing? It’s intentional.
Alston said in his report that with Universal Credit, successive governments were guilty of:
failing to properly design a system that is meant to guarantee the social security of so many…
On the contrary. Successive governments and the unelected civil servants have designed Universal Credit perfectly. And its roll out is going pretty well to plan.
It was always meant to be chaotic. The more confusion and difficulty experienced by claimants, the more potential claimants would be put off applying for it. It’s the same notion of poor prison conditions being used as a ‘deterrent’ to put people off committing crime.
So, the worse Universal Credit is, the more people will fall off the edges of society or get any work they can. It will leave those in the greatest of need reliant on it, stuck in this virtual workhouse.
Half-baked analysis. Game over?
Alston has done nothing to hasten the benefit’s demise. In fact, all he’s done is given the government and DWP ammunition to tinker a bit more around the edges if they want to. His report comes in a long line of UN reports and a Human Rights Watch one just this week. All were scathing but in reality all were useless.
His half-baked analysis and ironic tinkering around the edges (which Alston criticised the UK government for doing) is of no help to the millions of people suffering in the UK. It will be forgotten in a matter of weeks. And the barbaric roll out of the dystopian Universal Credit will continue.
It is again down to activists to spread the word in their communities, apply pressure on political parties and ultimately do everything they can to bring about the demise of this wicked, nightmarish horror.
I’ve given up writing full time to support my partner Nic, who lives with ME and nearly now 13 other diseases and illnesses. You can read about her journey here. Most of her medical treatment now has to be private; a challenge in itself with no income.
THIS PODCAST CONTAINS LANGUAGE SOME PEOPLE MAY FIND OFFENSIVE
Welcome to #ToppleUncaged!
Every week, The Canary will be bringing you a new podcast on the media landscape; hosted by me, Steve Topple.
I’ll be giving you the quickest news round-up in the UK in Plucked News. Then, I’ll be going in on some of the biggest stories with a very special guest on Free Flying With… After that, you get to have your say on the week’s talking points in Twitter Chirps Back. And finally, I’ll be bringing you the freshest, most banging political music in Revolutionary Bird Song.
This week’s guests? Up-and-coming journalist Alex Tiffin and UK reggae trailblazer YT.
FULL SHOW NOTES:
LISTEN TO MORE EPISODES AND INTERVIEWS FROM THE #ToppleUncaged PODCAST:
Brexit chaos has continued unabated this week with a petition to revoke Article 50 (A50) getting over four million signatures by 10am on 23 March. Also on 23 March was the #PutItToThePeople march in London.
Good for the “FBPE” crowd. Because while they obsess over the EU, there’s another petition out there. It’s calling for an inquiry into the deaths of disabled on the Department for Work and Pensions’ (DWP) watch. Sadly it has only got around 0.25% of the signatures of A50 one. Perhaps a damning testament to how ludicrous the UK political arena has become.
So, we’re in a mess with Brexit. I won’t furnish you with an update. Because by the time I hit “publish” on this article the situation will probably have changed. But in the midst of all this chaos another petition is doing the rounds. It’s one that I think is far more important than the other, liberal wet dream.
Justice for Jodey
Justice for Jodey Whiting. Independent inquiry into deaths linked to the DWP…
Here’s the link:
If you want to read the full background and Jodey’s horrific story, please read John Pring’s Disability News Service article here. But as he wrote:
Relatives of six disabled people who died due to… (DWP) failings have backed a new petition to MPs that calls for an independent inquiry into deaths linked to the department’s actions.
The petition… says such an inquiry should also investigate potential misconduct by ministers and civil servants.
And it says that any evidence of misconduct contributing to serious harm or deaths of benefit claimants should be passed to the police for a possible criminal investigation.
The petition… brands DWP ‘institutionally disablist and not fit for purpose’.
And it calls on DWP to ‘urgently change its policies and administration of social security benefits to make the safety of all claimants a priority’.
Sadly, I think six people’s deaths under the DWP’s watch is just the tip of the iceberg. The figures back this up as well.
Tens of thousands. Dead.
Nearly 30 people a day have been dying on the DWP’s watch, either waiting for benefit decisions or when the department told them they were ready to move towards work. Then, the DWP was forced to reveal 21,000 people died waiting for it to pay them money it owed them.
Meanwhile, an Oxford University study found that at least 590 people had taken their own lives, due in part to the Department for Work and Pensions’ (DWP) Work Capability Assessment.
This is on top of five successive UN reports, one of which slammed successive governments for committing “grave” and “systematic” violations of disabled people’s human rights. And another which branded the situation a “human catastrophe”.
All of this is without the self harm, abject misery, poverty and mental torture which the DWP has had a hand in.
A bunch of odious shits
So, why so few signatures for this petition, yet so many for the A50 one? Of course, if you’ve signed both – I salute you. So please disregard this section.
Let’s be honest: of course the A50 petition would be more important to some (not all) of the FBPE group.
Some of them are Lib Dem supporters, who helped push through harsher DWP benefit sanctions in return for the Tories passing their 5p carrier bag charge. No, really.
Then, some of them are Labour supporters from the Blair school of thought. The same ideology that started the DWP on the path to a “human catastrophe”.
Also, some of them are ‘compassionate Conservatives’. You know the ones – the Anna Soubry’s of this world whom TV show (and alleged disability advocate) The Last Leg think is amusing to have on as a guest. Actually, Soubry and her ilk are the worst kind of Tories: feigning care with one hand while metaphorically punching disabled people with the other.
But moreover, politician’s and the media’s demonisation and “othering” of sick and disabled people over the years has got us to this point. A point where there can be tens of thousands of deaths and the public barely flinch.
Of course, sick and disabled people dying now (as in, right now, probably 30 today) is far less important than the self-serving motivations of these collective odious shits and their FBPE obsession.
Sorry, what do you want?
You can argue with me until you’re blue in the face that Brexit will make life worse for sick and disabled people. Maybe it will. But point me to the evidence of how the EU stopped five UN investigations, tens of thousands of deaths and immeasurable suffering caused by the Tories and the DWP, previously?
Also, explain to me how you will reform the inherently undemocratic, corporatist capitalist EU for the better, to improve the lives of sick and disabled people in this country – when the EU project itself will either implode, or become neoliberalism on steroids?
And tell me how revoking Article 50 and/or a People’s Vote will not play into the hands of the far-right figureheads, already embolden by the Brexit chaos, plus seemingly unrelenting in their racism even after the New Zealand massacre?
I personally think, as I did in 2016, we’re screwed either way. So we need to get on with the job of dismantling the current systems of power where we can affect them: in this country.
Stop the deaths, or get lost
The first part of that is to stop people dying. Unless my moral compass is completely skewed and I should be focusing on where people can fish after Brexit? Would that be better for you?
Seriously, screw the people who think Brexit is more important than people dying, right now, in this country. And screw the self-serving horse you rode in on. Also, screw those who’ll tell me ‘We don’t!’ yet can’t put the energy they have into the FBPE movement, into fighting for sick and disabled people.
Anyone else who has a shred of moral credibility and half a heart, please sign the DWP petition here.
I no longer write for The Canary (due to my girlfriend’s chronic illnesses – read about that here) so any donations to keep this site and my writing here going, or help me and her, are gratefully accepted. Thank you.
This is the third of three articles on the subject of myalgic encephalomyelitis (ME, ME/CFS, chronic fatigue syndrome) and a current media campaign which is targeting patients. You can read the first one here and the second one here.
The background to a medical scandal
As I discussed in the first article, there is currently a coordinated media war against chronically ill and disabled people who live with ME. This is because of patients and supporters’ objections to PACE trial – a study which defined treatment for them.
The second article looked at one of the reasons why this media war is happening. Now, here’s what I believe is the most important narrative. It’s exactly what PACE trial has done to many people living with ME – and those chronically ill people not living with it.
As I previously wrote for The Canary:
For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelieved, stigmatised, given incorrect treatment, or told it’s ‘all in their heads’.
But there are effects of the PACE trial on chronically ill and disabled people that are not often discussed. They can be absolutely devastating.
Firstly, I think the issue of misdiagnosis by medical professionals is a massive one. As I’ve previously written, my girlfriend Nic was parked with a fibromyalgia diagnosis for years. But I don’t think she’s alone.
Research shows that between 2001 and 2013, diagnoses of ME/CFS fell by nearly five percentage points. During the same period, diagnoses of fibromyalgia increased by nearly six percentage points, sharply increasing around the time PACE trial was introduced:
Coincidence? Make your own minds up.
Moreover, diagnoses of fibromyalgia are highest among the poorest in society. For CFS, they’re the lowest:
For me, this is due to several factors.
Firstly, many people in the poorest communities don’t have the privilege [pdf] of further/higher education to be able to get their heads around complex medical conditions (NB. “Lowest SES quintile group” below = poorest in society):
Trust me, this has nothing to do with intelligence and everything to do with your postcode. The dickhead Boris Johnson and his private schooling is a prime example of a person being educated beyond their intelligence. But when you haven’t been taught how to analyse complex pieces of writing or interpret reports, it puts you at a medical disadvantage.
Then factor in time poverty (more prevalent in working class/poor communities) and people often don’t have the head space, either. So, people will simply trust what a doctor tells them, never questioning their diagnoses. You can count parents and children in this, as well – who are often told their agony and symptoms are just ‘growing pains’.
But what would make for interesting reading would be a study into how many people, previously diagnosed with fibromyalgia, but who stepped outside establishment medicine for help, ended up finding out they were actually living with diseases and illnesses like connective tissue disorders like Ehlers-Danlos syndrome, Lyme, Lupus, Cranciocervical and Atlantoaxial Instability – and, of course, ME – just to name a few.
From the other direction, you have an arrogant medical classism and misogyny from some doctors. ‘They’re poor, so they must be stupid. What do they know?’ Exhibit one, m’lud:
But you also have an ingrained belief in what they’re taught. It’s this unflappable trust in ‘science’ (even when the science has been repeatedly disproved, like PACE trial has) which leads to blanket dismissals of certain illnesses and misdiagnoses of others. It’s where the term ‘Zebra‘ comes from, in part. It’s because medical professionals think that the simplest diagnosis is the correct one:
When you hear the sound of hooves, think horses, not zebras…
I’m sure that two of PACE trial’s chief proponents, Professor Michael Sharpe and Simon Wessely, are not bothered by this. After all, they seem to buy into the idea that medical professionals are ‘holier than thou’. Far holier of course than Zebras, Nightingales, Spoonies and the Millions Missing.
But the outward ripple effect of PACE trial for people living with ME is never considered either. It’s one that can create tidal waves, threatening to engulf them.
Outside of the medical profession, the implication from PACE that people can ‘think their pain better’ and ‘exercise to reduce symptoms’ can be catastrophic. Because, when social services get involved and deem that a parent’s or child’s illness is ‘all in their heads’ the results can be devastating, as the ME Association reported.
Please don’t try and tell me this is isolated, because it’s not. I can name two mothers on my estate alone that had social services involved because of chronic illness. Moreover, the ME Association report just deals with people who have ME diagnoses. I dread to think how many undiagnosed cases of ME have been implicated in child protection issues.
This is an issue that’s probably worse in working class and poor communities. Research has shown [pdf, p3] that 60% of child welfare interventions happen in the bottom 20% most deprived communities. How many of these families have mis/undiagnosed illnesses?
This same issue reverberates around other public bodies like the education system and transport. Hands up if you’re living with ME and been told to move from the priority seating on a bus? The notion of ‘invisible illness’ and the prejudice around it has been compounded/played into by PACE trial. When doctors think it’s psychological, you can imagine what the rest of society thinks. Including families.
Many people already struggle to explain to family members, friends and their community just what the disease is and how it affects them. To then try and explain that a treatment for a physical disease is talking therapy? It again just compounds the notion that it’s ‘all in a person’s head’. Think yourself better, you pathetic hypochondriacs.
I’d say in my experience, this problem is again worse for working class and poor sick and disabled people. We’re back to the issues of further/higher education and time poverty again.
But in the cosseted world that Sharpe, ‘Sir’ Wessley (knighted for his establishment forelock-tugging contribution to psychology) and the rest of them live in, the socioeconomic intersections of PACE trial have probably never entered their over-educated, under-intelligent heads.
This issue is then compounded by another one.
The results for a patient of both CBT and GET are highly subjective. How much better does talking about it make you feel? Are the exercises making your pain less? Try as the PACE trial authors might, there is no hard and fast measurements of these.
So, once again we’re back to the ripple effect with people’s family, friends and communities. If people have cancer and it doesn’t work, you can blame the chemotherapy. A worsening for AIDS patients can be put down to their body’s unresponsiveness to anti-viral medication.
But if someone living with ME doesn’t improve from CBT and GET? Who’s to blame? Invariably it’s the patient, because they’re not ‘engaging with the therapy’, or not ‘working hard enough’ on the GET. This is because there’s no other entity involved in both ‘therapies’, except the practitioner and the patient. And the former can’t be wrong, naturally. So – you’re not trying, you worthless scroungers.
Not that this notion would have entered the heads of the arrogant PACE trial authors. Their own self-assured, messiah-like narcissism only orbits one world: their own.
I previously described the media war over PACE trial and professor Michael Sharpe as his “troll drama”. It is a drama. One he and the Science Media Centre (SMC) have scripted. One he and the SMC are directing. And one he is starring in.
For someone who claims he gets “abuse” from patients online, Sharpe is never off his Twitter – often searching out threads where’s he’s been mentioned but where his handle hasn’t been included.
But ultimately, Sharpe, in his privileged, well-heeled world is a disgrace to the medical profession for saying he’s the one being abused. If he can’t handle anger, criticism and concern from patients and their advocates (“activists” as the media circus would call them), then he’s in the wrong job. Make decisions about the lives of millions of people? Don’t do it if you don’t want a backlash if it’s proven your decisions are fundamentally flawed.
It runs deeper than this, though. The arrogant dogmatism of the PACE trial authors, who can’t possibly be questioned by patients, has extended to fellow medical professionals like Dr Emma Reinhold and MPs like Carol Monaghan. Caught in the crossfire for daring to break rank from the establishment narrative.
Lives destroyed. And for what?
Ultimately, though, this is about people. It’s about lives that have been ruined. This is about people effectively left to rot. It’s about abuse, distress, anger and neglect. This is about people who may have had relationships ruined, have self-harmed our possibly even attempted to take their own lives.
But it’s also about a medical profession that in some quarters believe they are god-like. That they should rule over their patients, without question. And that their patients should be grateful and servile for having the privilege of their presence in their lives.
Bollocks to that. PACE trial and its authors are a disgrace to the medical profession, causing misery on an untold number of people’s lives.
If this makes me an ‘abusive troll’, so be it. If the truth hurts the PACE trial authors that much, maybe they should try some CBT and GET. After all, what’s good for the goose…
I am no longer writing for The Canary, due to my partner’s chronic illness. You can read about that here. But if you like my work any gifts/donations to keep it going are gratefully accepted below. Thank you.
This is the second in three articles. You can read the first one here, and the third one will be out in a few hours.
The war continues…
As I discussed in the first article, there is currently a coordinated media war against chronically ill and disabled people who live with myalgic encephalomyelitis (ME, ME/CFS, chronic fatigue syndrome). This is because of patients and supporters’ objections to PACE trial – a study which defined treatment for them.
As I said in the first piece, the ME story has many threads to it. And one of them, detailed below, has far-reaching implications for people outside the ME community. It also shows why, in part, the media have waged this war. Because there’s a lot at risk if it loses.
Under the NHS, CBT and an “exercise plan” (which is GET, I’ve seen the consultations) is the recommended treatment for Fibromyalgia and Ehlers-Danlos syndromes (EDS). It’s probably applied to numerous other diseases and illnesses, too.
And it is this which forms part of a much wider agenda being pushed by the UK establishment.
Welfare “reforms” have been pushed by successive governments, most notably since 2008. The then Blairite New Labour government switched up things at the UK’s welfare (social security) agency, the Department for Work and Pensions (DWP). Not least, it introduced the Work Capability Assessment (WCA) for people claiming sickness-related payments. It was effectively saying that a doctor’s sick note was no longer enough to prove that people were entitled to disability and sickness-related welfare. The DWP wanted to check.
As I previously wrote for The Canary, the move was in response to the financial crisis. Blairite New Labour explicitly said so, but framed as if it was helping sick and disabled people. But in reality, it was a two fold approach.
Firstly, it was a way of reducing the welfare bill in line with bank bail-out-induced austerity. Secondly, in tandem with the burgeoning self-employment and ‘gig’ economy, it was part of a response to stave off recession; flooding the employment market with people who’d take any job going because the government had left them with no choice.
The election of the Conservative Party into coalition in 2010 took Labour’s agenda, and cruelly magnified it. It worked.
The betrayal of millions
Between October 2008 and July 2017, the DWP declared at least two million sick and disabled people ‘fit-for-work’. A further two million more withdrew their welfare claims. Millions of people, who previously may well have got sickness benefits, were suddenly magically cured by the DWP. It’s here where PACE trial comes in.
Take a medical trial, part funded by the DWP and conducted by some researchers with links to the private insurance industry.
Add to this junk-science theories (PACE) that patients can ‘think themselves’ free of pain, and exercise to improve their symptoms.
Dollop in some media support via the SMC, plus an unquestioning NHS.
Throw in at least 250,000 ME patients, two million Fibromyalgia ones, an unclear number of EDS patients and probably other sick and disabled people along the way.
Force CBT and GET upon them.
Watch them accept it because many of them are the most deprived in society.
Tell all these people that if CBT and GET don’t work it’s their fault, or that their illnesses are ‘all in their heads’.
Tell the ones whose illnesses are ‘all in their heads’ that they’re not entitled to welfare. And tell the ones who are doing CBT and GET it’s proof they’re not that ill. So they’re not entitled to welfare, either.
What are you left with?
A corporatist capitalist’s wet dream. A decreased welfare bill, an increased cheap labour population and some smug ‘researchers’.
Or, as UK MP Carol Monaghan said, probably:
one of the biggest medical scandals of the 21st century.
So it continues
But don’t take my word for it. Because the UK government has got this part of its march to a dystopian future already sewn-up. Now, its moved [pdf, p43] onto its next target group: those living with mental health issues and musculoskeletal conditions and mental health issues.
We’re already seeing the DWP put work advisers into NHS talking therapy settings to get people in mental distress back to work. Or “psycho-compulsion” if you prefer. Last year, the NHS scrapped certain treatments for people living with some musculoskeletal conditions. And the DWP tried (but ultimately failed) to issue blanket guidelines to deny people living with mental health issues certain welfare payments.
But moreover, a certain Professor Wessley has just reviewed the UK government’s mental health laws. His recommendations include letting patients decide their treatments. In other words: ‘if you don’t get better it’s your fault’, or ‘you’re not really that ill, are you?’
The final knife to the heart? The DWP’s new, all-encompassing welfare payment Universal Credit. If you don’t know about it read my history lesson for The Canary here. But it’s essentially a policy to get everyone who can do the smallest amount of work possible, doing it. It’s a policy that’s been over a decade in the making and the linchpin to all of this.
Cui bono is Latin for “to whom is the benefit?” In the case of PACE trial, there are numerous recipients of all the evil benefits it brings. The government, junk scientists, gig employers and the stock markets to name a few.
But ultimately, there’s no ‘Illuminati’-style conspiracy, here. No single group of shadowy people are having secret meetings deciding all this. It is simply how our system works.
PACE: the thin end of the wedge
You have politicians who support the fundamental notion of capitalism that poverty is built in. They also support the idea of free markets, corporate globalisation and worshipping at those altars. So it is, of course, second nature and involuntary to them that poor, sick and disabled people are disposable; much like the thought processes behind sending people to war.
You have medical professionals like Sharpe and Wessley who are either one of two things: gullible fools, not realising exactly what their primary school science has done. Or, they are utterly complicit narcissists, knowing what they are doing is abusing and harming millions of people – but the glory (and paychecks) are too tempting for them to repent.
You have journalists who fit the above criteria. Or they’re just thick as pig shit. You have the SMC, pretty much in the same categories.
Then you have everyone else: the NHS GPs and consultants, the DWP staff, the charities. All so compliant, so servile, so forelock-tugging and so consumed by the system that they don’t even realise what they’re doing. ‘But I’ve got bills to pay! I can’t possibly rock the boat!’
Connect the dots
Trevor Butterworth, from US organisation Sense About Science (like the SMC but in the US) responded to a tweet I was tagged in, which was discussing the links (see my previous article) between journalists and the SMC. And I’m afraid his assertion is very wrong:
Because PACE, where it comes from and why it’s defended, is the same system, ideology and ultimate disregard for other human beings that defends Monsanto, that defends GM crops, that defends wars, poverty, climate change and everything else.
But ultimately with PACE, you have millions and millions of sick and disabled people. Ones like my girlfriend, who have been so abused and mistreated by the medical profession, the DWP and ultimately the system that she’s almost given up.
A privileged, warped reality
Sharpe doesn’t have to deal with her effective PTSD whenever she has to go to see any NHS professional who automatically presumes she is a ‘hypochondriac’, ‘suffering’ from poor mental health. Thanks in part to PACE trial she was sectioned (locked up in a mental institution) for nine days because everyone believed her illnesses were ‘all in her head’. They weren’t, and she was discharged without a mental health diagnosis.
Wessley doesn’t have to sit and listen to low-down-the-food-chain NHS neurologists tell you the best cure for ME is “psychotherapy”. Nor does he have to explain time and time again that yes, ‘we’ve tried CBT and GET and it made her worse’. After explaining what ME is in the first place, obviously. And getting past the it’s just “Yuppie Flu‘ prejudices.
Neither of these men have to comfort her when she crying her eyes out, day after day, because it’s all too much and she feels she can’t go on constantly fighting classism, both socially and medically. Which is, in essence, what much of PACE trial manifests as. I’ll discuss that in the third article.
Not that either of these men care. If they did, they would have admitted their corrupt, nefarious and down right cruel experiment at the expense of some of the sickest people in society was a sham, a farce and a fraud.
I doubt that will ever happen. So I and millions of missing people will remain “trolls”. Or rather, patients and their supporters who have suffered decades of abuse; the implications of which are almost unimaginably far-reaching.
In response to a comment from Trevor Butterworth, I am happy to include that Sense About Science and himself have been highly critical of PACE trial. Read more here.
The third article will be out shortly. You can read the first one here.
I am no longer writing for The Canary, due to my partner’s chronic illness. You can read about that here. But if you like my work any gifts/donations to keep it going are gratefully accepted below. Thank you.