Forced contraception for ‘vulnerable’ women is happening in the UK

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”:

Asset-1-100.jpg

Pregnancy reduction

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.

Selective breeding

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.

Social engineering

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.

Safeguarding concerns

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.

Systematic misogyny?

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.

Broken families

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?

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.

Nudging away

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.

Psychosocial warfare

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

As professor Brid Featherstone told BBC News, it looks like Pause “links to a notion of conditional welfare”. She said:

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.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
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Parliament just slapped millions of disabled people in the face

A debate in parliament on Wednesday 5 June showed at best the lack of concern for millions of disabled people. At worst, it is a sign of the contempt hundreds of MPs hold their chronically ill constituents in.

Another day, another debate

A debate on invisible disabilities and access change happened in the House of Commons. It was about impairments that are not always visible in terms of their effects, and what can be done to raise more awareness of these.

Now, don’t misunderstand me. I am the partner of someone who lives with predominantly invisible disabilities and illnesses. So, I welcome any debate into the lives of chronically ill and disabled people and how government and society treats them.

Nic’s story

My girlfriend Nicola Jeffery is just one example of millions of people in the UK ravaged by chronic but often invisible diseases, illnesses and conditions. She currently lives with (yes, it’s gone up again since the last time I wrote):

  • Hypermobile Ehlers-Danlos syndrome (hEDS).
  • Myalgic Encephalomyelitis (ME).
  • Postural Orthostatic Tachycardia Syndrome (POTS).
  • Craniocervical Instability (CCI).
  • Atlantoaxial Instability (AAI).
  • Hypotension.
  • Megaloblastic Anaemia.
  • Peripheral Neuropathy.
  • Chronotropic Incompetence.
  • T3 Hypothyroidism.
  • Mycotoxicosis.
  • Deformations in left foot, left leg shortness.
  • Non-epileptic focal aware and tonic clonic seizures.
  • Polycystic Ovary syndrome.
  • Temporomandibular Joint Dysfunction (TMJ).

Nic is the perfect example of how invisible disabilities can severely debilitate someone’s life. She explained in her usual, eloquent but to-the-point manner in this Twitter thread. I suggest you read the whole thing:

In short, her treatment at the hands of government bodies, medical professionals and society more broadly has been disgusting.

But Nic’s story, which you can read here, is sadly like hundreds of thousands of other people across the world.

So, Wednesday’s debate was an opportunity for MPs to show their concern, understanding and wish for action to happen.

‘Rarely diagnosed’. Rarely debated.

As I tweeted, invisible disabilities are far from ‘rare’ in the UK. As Nic always says, they’re more ‘rarely diagnosed’:

Did MPs turn out in their droves?

Did they hell:

HoC Invisible Illnesses.png

Now, I know what you’re going to say.

All the white bits of paper on the benches are MPs who aren’t physically present but who wish to either vote or make it be known they support the debate. Ironically, they’re ‘invisible’ but still there.

This is not the point.

“Parasites”

As I previously wrote for The Canary, we’ve been here before. A UN committee accused successive UK governments of “grave” and “systematic” violations of disabled people’s human rights. It said they had caused a “human catastrophe”.

But the parliamentary debate into this was almost empty. As I wrote at the time:

empty seats… amplify the impression to the public that disabled people’s rights are a niche issue – one that doesn’t require the full attention of MPs – just a handful to show willing by the party… It gives the feeling that the “grave” and “systematic” violations of… 13.3 million disabled people’s human rights are not really that important…

 

The UN previously said there was a culture in UK society where disabled people were viewed as “parasites, living on social benefits… and [living on] the taxes of other people”. And by not bothering to take half an hour out of their day to sit and listen to a debate over one of the most serious issues in recent history… MPs merely add fuel to this fire.

The invisible disabilities debate was exactly this, with the usual exceptions.

Shout outs and shout downs

The ever-present and indefatigable Labour MP Debbie Abrahams has been a bastion of solidarity with disabled people, and was of course present. Sharon Hodgson and Justin Madders were also there, among others. The SNP’s Carol Monaghan and Angela Crawley were there, the latter making very good points about the Department for Work and Pensions (DWP). Some Tories were present, with Justin Tomlinson representing the government.

But the lack of MPs once again gives the impression that they really don’t care that much. It’s an impression that for many of them is probably spot on. Disabled people, as the UN alluded to, are viewed by many MPs as a burden to be tolerated. They are people who should be kept in the most basic of living standards by the state (if at all) and otherwise forgotten about. Empty benches on this debate were of little surprise.

Underwhelming

Of course, the end result of the afternoon was as underwhelming as the turnout. As Nic tweeted:

Yup, that was just about it.

Forget breaking down the miseducation, prejudice and stigma that exists in the medical world over countless invisible disabilities like ME.

Don’t worry about the scandal of “Fabricated or Induced Illness” (FII) diagnoses, where the state removes children from their parents – often because their disabilities are invisible and bodies like social services think the mothers are making their children’s illnesses up.

Let’s not debate PACE trial – one of the biggest medical scandals of the 21st century that has left people living with ME, EDS, Fibromyalgia and other conditions effectively being told to ‘think themselves better’.

We won’t talk about the scandalously low levels of research funding into diseases like ME, either.

Nor will we mention the barely fit-for-purpose Equality Act 2010, that is even less fit-for-purpose for invisible disabilities.

And let’s ignore the entrenched misunderstanding, abuse and neglect that exists in the very fabric of our society just because people living with invisible disabilities look ‘normal’. From disbelief and accusations of lying to being kicked off accessible seats on buses. It’s there, and it’s not invisible.

Wednesday’s debate was just another example in a long line of parliamentary lip service to disabled people. I applaud the MPs who were present. But the woeful turnout and the limp conclusions offer nothing to millions of people in this country, whom society has thrown on its scrapheap.

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.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
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CanaryPod: #ToppleUncaged meets… Your Heterosexual Violence

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 DWP’s Universal Credit was just saved by Philip Alston

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:

UK Alston Poverty Report Final

As the The Canary‘s James Wright reported, much of Alston’s report was damning. He said that:

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.

“Universal Discredit”

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

I would urge you to read here a potted history of Universal Credit I did for The Canary. But, in short, as I wrote:

Universal Credit was the brainchild of [Iain Duncan Smith] and his think tank [the Centre for Social Justice (CSJ)] along with some people who are, essentially, Christian fundamentalists.

 

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.

Propaganda overdrive

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.

Public confusion

The pollster reported in October 2018 that public opinion over Universal Credit was divided:

Universal credit charts-01.png

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.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
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At #PMQs Theresa May threw millions of disabled people under a bus

A question from a Labour MP at Prime Minister’s Questions (PMQs) on Wednesday 8 May gave Theresa May the chance to throw millions of disabled people under a bus. But it also exposed an under-reported catastrophe for potentially hundreds of thousands of chronically ill people.

An “isolated case”?

Labour MP Sandy Martin raised the issue of a disabled constituent with a disabled child who had their benefits stopped. The mother lived with myalgic encephalomyelitis (ME) and fibromyalgia, and her child had hypermobility, therefore possibly a connective tissue disorder.

Listen to Martin’s question and May’s response below:

 

 

Martin took to Twitter to imply May thought his constituent’s case was “isolated”:

The PM may well indeed have implied Martin’s constituent’s case was ‘isolated’. But the reality in the UK for people living with ME, fibromyalgia and hypermobility/connective tissue disorders is very different.

A chronic epidemic?

Here are details about ME, fibromyalgia and connective tissue disorders. But all come with symptoms of generalised pain, chronic fatigue and cognitive impairment. All can be debilitating in many cases, leaving some people house or bed bound. And all are poorly misunderstood by medical professionals, government agencies and society.

Estimates put the number of people living with fibromyalgia between 1.5-2 million; the number of people living with ME at 250,000, and there are no estimates for the number of people living with connective tissue/hypermobility-related illnesses – although the Ehlers-Danlos syndromes (EDS), for example, are thought to affect 1 in every 5,000 people. So that’s around 13,000 individuals in the UK.

So, let’s use a ballpark figure of around two million people in the UK that live with either fibromyalgia, ME or connective tissue disorders. It’s probably an underestimate.

Just how many of these people does the Department for Work and Pensions (DWP) give benefits to?

The official figures show…

Based on my own analysis of the DWP’s data website Stat-Xplore the most recent figures show:

  • 15,936 people with chronic fatigue syndrome (CFS) got Personal Independence Payment (PIP). The DWP uses the term CFS, not ME.
  • 73,560 people with fibromyalgia got PIP.
  • 11,349 people with connective tissue disorders got PIP. The DWP does not include EDS specifically in its data.
  • 16,305 people with “Chronic Pain syndromes” (which would cover CFS and fibromyalgia) got Disability Living Allowance (DLA).
  • 91,164 people with “Diseases of the Muscles, Bones and Joints” (which would cover connective tissue disorders) got DLA.
  • 270,636 people with “Diseases of the Musculoskeletal System and Connective Tissue” (which would cover all of the above) got some form of Employment and Support Allowance (ESA).

That equates to the DWP giving benefits to just under 500,000 people with ME, fibromyalgia and connective tissue disorders – out of around two million people. Except it’s a gross over-estimate, as many more illnesses are grouped into some of the categories.

You can view the data I used here, here, here and here.

It should be noted that these figures are for claimant’s main reported disability. So there may be some people who get benefits with another condition aside from ME, fibromyalgia or a connective tissue disorder. But the figures still raise some worrying questions.

Shocking abandonment?

What we do know is that out of at least 250,000 people living with ME, the DWP gave PIP/DLA, the main disability benefits, to under 30,000 of them when it was their main disability. That’s just 12% of people living with this debilitating disease. To me, this doesn’t sound right.

It’s even more damning when we know that between 35,000 and 70,000 people in the UK have “severe” or “very severe” ME. This often leaves people bed-bound day in, day out. But it appears the DWP does not even give all of these people benefits.

Of fibromyalgia, possibly 80,000 people at best got PIP/DLA for it – out of 1.5-2 million people, or 4-6%.

We don’t know how many people with EDS get benefits, as the DWP doesn’t bother to even recognise it as a separate medical condition.

For ESA, if you put my ballpark two million figure of people in the UK living with ME, fibromyalgia and connective tissue disorders into the DWP’s figure, it would mean that only 13% of these people got benefits for these conditions. It seems unfathomable to think that this is correct.

Rejected. Refused. Millions missing.

So, Prime Minister, was Martin’s example isolated?

Your government’s own figures would suggest otherwise. It’s impossible to imagine how many people living with ME, fibromyalgia and connective tissue disorders do not get the benefits they are entitled to.

The ME Association reported in 2010 that:

our experience as a support charity is that people with ME/CFS have a great deal of difficulty in obtaining sickness and disability benefits when benefit applications are first assessed, or are later re-assessed – even when they are fully supported by their GP or consultant.

Although initial claims are often rejected, there is a high rate of success (around 40%) on appeal – indicating that eligibility criteria and medical assessment procedures are poorly designed for people with this illness…

The refusal rate (for ESA) here is probably even higher than 75%…

It seems that very little has changed. But May probably doesn’t see the irony that, during ME Action Network’s #MillionsMissing campaign week, she effectively ignored the hundreds of thousands of chronically ill people missing from the welfare system. She may as well have thrown them under the nearest bus.

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.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
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Happy Easter. Unless you’re living with ME.

Chocolate eggs? No. A roast dinner with the whole family around the table? No. Binge-watching movies on the sofa? No. Going out drinking and partying? No.

Happy Easter for many of you, I’m sure. But not if you’re living with an illness that’s ‘all in your head’.

Myalgic encephalomyelitis

As I previously wrote for The Canary:

Myalgic encephalomyelitis, commonly referred to as ME, is a chronic systemic neuroimmune disease. It affects an estimated 17 million people worldwide and around 250,000 people in the UK. While symptoms vary for every person, people living with it often experience:

  • A worsening of symptoms brought on by physical activities, mental activities, or both. Often referred to as post-exertional malaise.
  • Flu-like symptoms.
  • All-over pain.
  • Sleep disturbance / problems.
  • Cognitive impairments.
  • Impairments of the body’s autonomic systems, such as nervous, digestive, and endocrine.
  • Hypersensitivity.

But ME has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelievedstigmatised, given incorrect treatment, or told it’s ‘all in their heads’.

You can read my full body of work for The Canary on ME here.

Nicola’s story

As I’ve previously written, my girlfriend Nicola Jeffery lives with ME, along with a host (now ten in total, as it happens) of other conditions, diseases and illnesses:

She is also now under clinical investigation for:

• Hypothyroidism.
Sheehan’s Syndrome [pdf].
Hypochlorhydria.
Chronotropic Intolerance.

I’ve written extensively about her story to this point. You can read that work here.

So, what does our Easter look like? Probably a world away from many people’s. But also very similar to Easter for millions of chronically ill people.

Just another week in the Jeffery-Topple household

Around 5am on Wednesday 17 April Nic started vomiting. This was followed by diarrhoea. This continued until around 2:30am on Thursday. For the rest of the day she fell in and out of sleep. It’s now Friday 19 April at 1:30pm and she’s eating something for the first time since Tuesday. But only half managed it and has gone back to bed.

Her blood pressure fell to 78/33 at one point, which is worryingly low. During this time she also had three suspected focal seizures. I say “suspected” because no medical professional is able to explain what they are, except they present like them. No tonic clonic this time, though. So we’re grateful for small mercies.

“Why didn’t you call an ambulance?” I hear you scream down your devices.

For numerous reasons. Not least because this bout of unexplained sickness has happened countless times before. But also because we know that a hospital would do little that we weren’t doing at home. In fact, they may in the long term have made the situation worse. If you’re wondering why I think that, check out the reasons why we’ve switched to a paleo-keto diet. All will be revealed. Plus the likelihood of mental health being brought into the equation. Our glorious NHS, hey…?

We’re now weaning her back onto food, and will start reintroducing the 17 different tablets/oral/intravenous solutions she’s on a day, in time.

So, Easter has gone out of the window for us. But for Nic, and millions of people like her, it was never actually in the window in the first place.

Sunday roast? No chance.

If you’re non-disabled, you probably relish the thought of a huge Sunday roast with all the family. If you’re living with ME this could be your worst nightmare.

Maybe explain to people why you can’t eat half the food on your plate due to your socially damaging, highly restrictive diet.

Try eating all that when you have impaired digestive transit. Or if you’re struggling to swallow. Maybe if you have hypersensitivity to taste.

Also, try eating all of that while numerous people talk around a table and you’re hypersensitive to sound. Then try it when your cognitive function is so impaired you can barely follow one person in conversation, let alone a whole group of people.

This, of course, all presumes your family hasn’t effectively disowned you because they think your illness is ‘all in your head’ and you just need to ‘pull yourself together’.

Enjoy your lamb.

Easter eggs? Jokes.

If you’re non-disabled, the best part of Easter may be chocolate eggs. If you’re living with ME, they could be torturous for you.

Histamine intolerance may mean you can’t even eat chocolate. Mast cell activation syndrome could mean it will trigger an allergic reaction in you. And if you’re on a socially damaging, highly restrictive diet, we’re back to the sugar problem again.

Meanwhile, you have to have the strength in your hands to remove the foil wrapping and then break the chocolate in the first place.

All that of course assumes that you even have the money to buy Easter eggs. Try getting the Department for Work and Pensions (DWP) to give you benefits when your condition is still considered part-psychological by much of the medical community.

Hope you have a good sugar rush.

Binge TV? Out of the question.

If you’re non-disabled, you many plot yourself on the sofa and watch endless movies for much of the weekend. If you’re living with ME, this could be near-impossible.

Try being in any other position except lying down for a long period of time when every part of your body aches, you feel like your walking under water and you have a constant fog of light headedness.

Maybe try and sustain your concentration for more than just the news when your cognitive function is so impaired you can’t remember what the weather is going to be like from one day to the next.

Then have a go at enjoying a film when the slightest laugh, scream or groan from people feels like the noise of a high speed train right next to you. And throw in the noise of the television and the strain on your eyes for good measure.

I do hope you have fun watching your Hollywood brain-bleach.

Get ready to party? Not here.

If you’re non-disabled, you may go out over Easter to the pub or a club. Or, like me and Nic were, put on the guest list for a concert by a rapper like Lowkey. If you’re non-disabled, this would be impossible.

Attempt to get showered and dressed when your body is so weak that even going to the toilet exhausts you for hours afterwards. Try putting your make up on when your hand to eye coordination is screwed. Not that you’d be able to sustain the holding up of your arms for that long, anyway.

Try drinking alcohol when you know it will leave you even more bed-bound than you were already. Oh, and try affording alcohol under the DWP.

Maybe you’d like to go to a venue where there are going to be hundreds or thousands of other people, exposing you to their germs, which could make you seriously ill. Hundreds or thousands of people all ready to brush past you or bump into you, but in doing so leaving you in agony.

Or try dealing with the same issues you had eating your Sunday roast with a small group of people all in intense conversation – but multiply it by hundreds and throw in extremely loud music for good measure.

Oh, and try all of this when you can’t use public transport due to the infection risk, the danger of physical damage and the lack of accessibility for chronically, invisibly ill people. And if you want to try and get a taxi to and from where you’re going to, we’re back to the DWP issue again.

I hope your hangover is worth it.

Happy Easter.

Ultimately, try doing all of these things when you constantly feel like you have the flu, never have any energy nor have the cognitive function to decide whether to even do them or not.

Then try doing them when much of the medical profession and state systems disbelieve you, leaving you with no support except other people in exactly the same boat. Even friends and family will only tolerate your inconsistency, the consuming nature of your disease and your inability to do what most people consider ‘normal’ for so long. Gradually, knocks don’t appear at the door. The phone slowly stops ringing. Messages are left unreplied to.

And ultimately, trying doing all of this with the overwhelming feelings of guilt your disease leaves you with.

So, no. There is no Happy Easter for millions of chronically ill, disabled and sick people. There’s just another long weekend, spent fighting not only their own bodies but also a system and society that’s not designed for them to fit in to. Let alone live in.

I’ve given up writing full time to support Nic. Most of her medical treatment now has to be private; a challenge in itself with no income.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
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CanaryPod: #ToppleUncaged EP19

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.

Enjoy!

FULL SHOW NOTES:

https://www.thecanary.co/podcasts/2019/03/24/canarypod-topple-uncaged-ep19/

LISTEN TO MORE EPISODES AND INTERVIEWS FROM THE #ToppleUncaged PODCAST:

https://www.thecanary.co/topics/canary-pod-topple-uncaged/

 

 

Brexit Britain: where dead disabled people are less important than the ‘A50’ petition. #PutItToThePeople?

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

It’s called:

Justice for Jodey Whiting. Independent inquiry into deaths linked to the DWP…

Here’s the link:

https://petition.parliament.uk/petitions/243337

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.

If not…

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.

‘Othering’

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.
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