He’s royal. So royal.
A new wave of artistry
FULL SHOW NOTES: CanaryPod: Topple Uncaged – Antonia’s story, part two
THIS PODCAST CONTAINS LANGUAGE AND CONTENT SOME PEOPLE MAY FIND OFFENSIVE. THE VIEWS EXPRESSED IN THIS EPISODE ARE THE OPINIONS OF THE HOST AND GUESTS. Welcome to series two of #ToppleUncaged! Every week, The Canary will be bringing you an innovative podcast for the media landscape; hosted by…
THIS PODCAST CONTAINS LANGUAGE AND CONTENT SOME PEOPLE MAY FIND OFFENSIVE AND UPSETTING. THE VIEWS EXPRESSED IN THIS EPISODE ARE THE OPINIONS OF THE HOST AND GUESTS. THE GUESTS GAVE THEIR FULL PERMISSION FOR SHARING THIS INTERVIEW. Welcome to series two of #ToppleUncaged! Every week, The Canary will…
The Department for Work and Pensions (DWP) has published its latest claimant count estimate for unemployment benefits. But look beyond the figures, and a picture is revealed of how many estimated people, currently unemployed but not subject to sanctions, will be so under Universal Credit.
The number is around 400,000 claimants, higher than a previous estimate of 300,000. And within this group may well be carers, sick and disabled people.
The DWP: moving the goalposts
The Claimant Count was previously the number of out-of-work people claiming welfare, specifically Jobseeker’s Allowance (JSA). But recently, after the Office for National Statistics raised concerns about its accuracy, the DWP changed it. It became the “Alternative Claimant Count”. This was due to the introduction of Universal Credit.
Essentially, the Alternative Claimant Count includes those getting JSA plus people on Universal Credit who are required to look for work.
But what the count also includes are estimates from 2013 onward of people who, if they were on Universal Credit, the DWP would make look for work. These are claimants who under old (“legacy“) benefits would not have had to. They are called ‘additionals’ and the figure is an estimate, based on the notion of the DWP having implemented Universal Credit in full from January 2013.
And here’s the catch.
As the DWP says, these ‘additionals’ consist of:
- People who are not in work but previously claimed Housing Benefit only, not Jobseeker’s Allowance.
- People whose household previously claimed Child Tax Credit, but are not themselves earning more than the Universal Credit administrative earnings threshold; and nor do they have responsibility as the main carer for their child.
- People who are the partner of a claimant of Employment and Support Allowance (ESA) or Income Support, but who do not themselves have caring responsibilities, a disability or a limitation on their ability to work
As the Child Poverty Action Group (CPAG) said in a February briefing [word.doc download, p4]:
The DWP’s estimates of ‘additionals’ are inevitably speculative, and the actual number of additionals who join the claimant count in the future will depend on labour market conditions at the time as well as on benefit entitlements, administrative procedures and claimants’ own decisions. Nevertheless, the fact that only about 82,000 ‘additionals’ were actually claiming UC [Universal Credit] at November 2018, compared to a hypothesised 366,000 if UC had been fully rolled out, indicates how much further the implementation of the extended conditionality of UC still has to go.
And further to go the conditionality of Universal Credit still has.
400,000 more sanctioned people?
82,000 actual ‘additionals’ in November 2018 represented 6% of the total number of Universal Credit claimants at that time (figures via Stat-Xplore):
The DWP’s most recent estimate of ‘additionals’ yet to go onto Universal Credit was 308,000. This was published on 19 July.
But the Office for Budget Responsibility (OBR) forecast [xls download, table C6.2] in 2018 that 6.7 million people would eventually be on Universal Credit once the DWP has fully rolled it out.
So, based on November 2018 figures, if the trend continued, this would mean that by the end of the roll out, 402,000 people would be classed as ‘additionals’; subject to sanctions when they weren’t before.
So, why does this matter?
Forced to work
The DWP is effectively forcing people who previously did not have to look for work into the same sanctions-linked regime as those who do. And it’s who’s in this ‘additionals’ group that counts.
Take one subset of additionals, those who:
are the partner of a claimant of Employment and Support Allowance or Income Support, but who do not themselves have caring responsibilities, a disability or a limitation on their ability to work.
DWP figures show as of May 2019 there were just over 14,000 people like this. What it doesn’t say is why these people aren’t working while their partner claims ESA or IS.
Hitting unpaid carers?
To get Carer’s Allowance, you have to be caring for someone who gets Personal Independence Payment (PIP). As I’ve documented for The Canary, the DWP is making it increasingly difficult to get PIP. Between April 2013 and April 2018 the DWP denied around 381,000 people PIP; people who used to get its predecessor Disability Living Allowance (DLA). These people would still be able to get ESA.
So it begs the question: how many partners of these people, previously entitled to DLA, are still caring for them, even though the DWP refused them PIP?
The point being that to be classed as having “caring responsibilities” in the eyes of the DWP you have to get Carer’s Allowance via PIP or meet very specific criteria.
So, these 14,000 people who the DWP are going to force to look for work could well be full time carers to their partners. It’s just that because of the department’s vicious assault on PIP, they’re no longer recognised as one. Or, their caring duties are such they don’t necessarily fit the restrictive and quite frankly outdated criteria.
The same principles could apply to the two other subsets of ‘additionals’.
Hitting sick and disabled people?
The partner of someone claiming Child Tax Credits, who only can work a few hours a week due to fluctuating ill health; ill health that doesn’t fit DWP guidelines for ESA. I know one such person myself.
Or the “people who are not in work but previously claimed Housing Benefit only, this means [they] did not claim Jobseeker’s Allowance”. These could be people who the DWP has refused to give ESA but can’t apply for JSA as they would not be able to work. Essentially, people the DWP has let slip through the cracks.
I also know someone like this. They’re housebound most of the time due to complex physical and mental health issues. But the DWP refused them ESA and forced them to claim JSA. A tribunal eventually disagreed, and made the DWP put them back on ESA. If it hadn’t, they would have ended up coming off JSA due to not being able to cope with work. But then, when Universal Credit applied to them they would have been forced to look for work, or get no welfare payments at all. Not even Housing Benefit.
We are hitting peak dystopian callousness from the DWP. While the numbers mentioned above may seem small, viewed through the prism of the carnage Universal Credit is already inflicting, these figures are another damning indictment of the department and successive Tory governments. The authoritarian, nefarious drive to push as many people into whatever kind of work possible, continues unabated.
I’ve given up writing full time to support my partner Nic, who lives with 16 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.
We are currently fundraising to try and get her treatment for her two types of seizures, not available on the NHS. Read about that here.
The Department for Work and Pensions (DWP) just denied full benefits to a chronically ill and disabled person who lives with 16 different diseases, illnesses and conditions. The decision shows the abject failure of government outsourcing. But it also demonstrates the callous and incompetent nature of the welfare system.
16 illnesses and counting
Personal Independence Payment (PIP) is a welfare entitlement from the DWP. Is it intended to help towards the additional costs disabled and sick people have due to their conditions.
My partner Nicola Jeffery is one such person. You can read all about her medical story here. In short, she lives with:
- Hypermobile Ehlers-Danlos Syndrome (hEDS).
- Myalgic Encephalomyelitis (ME).
- Postural Orthostatic Tachycardia Syndrome (POTS).
- Deformations in left foot, left leg shortness.
- Polycystic Ovary Syndrome.
- Temporomandibular Joint Dysfunction.
- Craniocervical Instability (CCI).
- Atlantoaxial Instability (AAI).
- Megaloblastic Anaemia.
- Peripheral Neuropathy.
- Chronotropic Incompetence/Intolerance.
- Non-epileptic tonic clonic and focal autonomic aware seizures.
Oh, and possible Secondary Mast Cell Activation Syndrome. We’re still looking into that.
I gave up work full time to support Nicola. You can read more about that decision here. Since then, we have accumulated probably the best clinical evidence of her illnesses available in the UK. I’d put my neck on the line to say most people have not got the extent of a diagnostic picture she has.
It has cost a small fortune from my mother’s life savings, and we are now having to fund raise to get further treatment for her seizures, like the one below:
This is because the NHS will only recognise them as “functional/dissociative” or “psychomatic”, even though I have hard clinical evidence that proves otherwise.
You can read about our fundraising here, and if your can help please donate via this link:
She is house bound for 85% of the time. When she does go out, she has to build up to it. Afterwards, she is incapacitated for several days. This is just one aspect of her health. The implications of all her conditions are extensive and systemic, affecting every part of her body.
Going back to the DWP
So, she applied for PIP. We submitted several doctor’s reports, a complete diary of Nicola’s life for the entire month of May, her complex treatment regime and more.
After a PIP assessment where the assessor let a fire door slam onto Nicola, almost knocking her over and injuring her hip, we got this decision:
As is usual, the assessor appeared kind and understanding, which we know is never a gauge of the outcome.
I wasn’t expecting the DWP to award Nicola higher rate for both without a fight. But I was expecting standard rate mobility and possibly higher rate for daily living. To say I was furious wouldn’t do my anger justice.
Let me break the DWP’s decision down for you using one area as an example. We have clinical evidence to back up every single claim I make below.
Full time caring? Not according to the DWP
Around four hours of my day is spent preparing Nicola’s complex medication regime and cooking. The former consists of 26 different supplements and pharmaceutical medications, administered at six different points across the day.
This is what she takes in the morning:
The latter consists of a controlled carbohydrate and sugar free diet, where every ingredient has to be measured and the calorie (kcal) content calculated.
Nicola has dysphagia, which means she has difficulty swallowing and can be at risk of choking. She also has impaired cognitive function, meaning she cannot remember what she is taking when. Her impaired cognitive function means she struggles to follow written instructions for something with this level of complexity.
In her May diary, we noted that she attempted to cook a meal once. She struggled to remember the quantities of ingredients and was left exhausted and distressed after trying.
All the supplements, medications and the diet serve various functions to try and improve Nicola’s health; specifically with her ME and hEDS.
To be clear: this is not our medication and diet plan. It’s not a “lifestyle choice”. This is from one of Nicola’s private, General Medical Council (GMC) registered doctors. We also have written evidence of this plan being approved by three NHS, GMC-registered consultants.
The DWP’s score for Nicola on “managing your treatments” was 1 point, the minimum.
The reality? She should have scored 8, as I have to spend more than 14 hours a week preparing and administering it. I also have to “monitor” her “health condition” by taking five blood pressure, heart rate and temperature readings across the day. This is because some of the medication she is on results in changes to these. I also have to “monitor” her “health condition” by documenting her symptoms and being proactive when she has, for example, a Post-Exertional Malaise (PEM) crash, as this requires additional support and medication.
The DWP did not recognise any of this. It was the same story on most of the other descriptors. I won’t go into them as this article will turn into an essay.
But it’s the mobility decision that is the most infuriating.
The DWP did not believe that Nicola’s uncontrolled, random seizures warranted me having to support her to make familiar and unfamiliar journeys. Even though I have witnessed her having them in the street, and also at any time of the day. It did not equate that if she did have a seizure, on her own, in the street, and collapsed she would be at serious risk of neck injury owing to her CCI and AAI. Nor did it intersect this with the fact that Nicola can only attempt to go out one day a week.
It didn’t equate for the fact that Nicola cannot risk using public transport anymore due to, again, the risk of injury to her neck. Nor did it equate for Nicola not being able to use public transport anymore due to the risk of infection due to her weakened immune system. It didn’t equate for Nicola having an anaerobic threshold of four metabolic equivalents (METs), meaning she cannot do any exertion which takes her over this. Walking the 0.8km to our train station would be this. Going to and from a bus would use up part of those four METs.
The DWP didn’t take into account that Nicola can no longer plan and go on an unfamiliar route unaided, due to her cognitive impairment leaving her at risk of getting lost. Nor did the DWP take into account that Nicola forgot her parents address recently. They live 30 seconds walk away from us.
Overall, the assessment was a whitewash of the severity of Nicola’s health. The assessor even had the audacity to say that she was “not diagnosed with any cognitive conditions”. Even though ME, hEDS, CCI and AAI all effect cognitive function, as stated in the literature available.
As a side note, the assessor also said:
You are not taking any medications to treat your symptoms of nausea and vomiting and there is no evidence to suggest these symptoms in your plan.
The second part is firstly a lie, as the evidence was there in Nicola’s diary. The first statement about medication shows the incompetence of the assessor and the DWP. Nicola is taking adrenal hormone replacements which, in part, her doctor has prescribed to attempt to improve her digestive transit, thus improving her gastroparesis.
Back in 2016…
What sticks in the throat even more is that Nicola is getting the exact same PIP award as she was previously getting in 2016. That is, standard rate daily living component. This is despite at that time only living with an incorrect fibromyalgia diagnosis. But more over, this is despite a severe deterioration in her health, which I have fully documented. It shows a systematic failure by the DWP to ensure health assessment providers comply with working from the standardised guidelines. Or the department has built in this fault in the system to ensure the muddying of waters when it comes to a level playing field for claimants across the board; with the goal of saving money. It’s probably a bit of both.
The decision also shows the preposterous contradiction that sits at the heart of the DWP.
We are bombarded with this constant narrative of ‘scroungers’, ‘shirkers’, ‘benefits cheats’ and the notion that the government wants disabled people to get back to work.
Yet if you buy into that distinctly capitalist mantra, Nicola’s decision goes against this. Surely the DWP wants to support her to live independently and to get back to work? But by denying her entitlements it’s stopping her health improving. And ultimately, it is stopping her finding a job.
So, which is it?
Neither. Apparently the corporate-driven push to force as many sick and disabled people into work doesn’t apply to complex chronic illnesses. Nor does the notion of the state providing support when life metes out its worst at you, apply either.
Complex chronically ill people, often living with ME and EDS, are literally being left to rot. In Nicola’s and other’s cases, it is partly because the system and specifically the NHS does not even recognise her conditions. The assessor didn’t even know what several of them were. It is also because the PIP criteria is essentially incompatible with these kind of conditions.
Their carers and advocates are also left on the scrapheap. They are left scrabbling around, begging and borrowing, desperately trying to garner some minuscule quality of life for their loved ones. The same DWP contradiction applies here, too. I cannot work full time and therefore contribute tax while Nicola is so ill. Yet by denying her full PIP I cannot get state support either.
Two lives. Literally being wasted.
And for what? To save money on a welfare budget [pdf] that makes up around 2% of the UK’s total gross domestic product? We and millions of others are literally paying the price for economic illiteracy, personal incompetence and ultimately nefarious greed. But of course, the system is such it’s supposed to be like this.
Overall, Nicola is housebound the majority of the time. Her son has had to move into his dad’s due to the severity of her illnesses and our attempts to improve her health. She is left:
- Unable to cook.
- Unable to clean.
- Unable to write more than a few sentences.
- Unable to have visitors for longer than two hours.
- Unable to use social media for long periods of time.
- Unable to read more than a few pages of a book.
- Unable to have sex.
- Unable to eat properly.
- Unable to have proper bowel movements.
- Unable to shower daily and properly.
- Unable to live any kind of life.
If she does any of the above, her health deteriorates.
And still, all this is worth £57.30 a week to the DWP.
Out of options?
We are now left with a Mandatory Reconsideration, and most likely an appeal. Moreover, we are also left with hardly any financial support.
But most of all Nicola, who was for years told her 16 illnesses were ‘all in her head’, is left feeling disbelieved, isolated and abandoned. Again. Like she has for most of her adult life, not least by her family, some of whom still disbelieve her to this day.
All this just so the DWP can save a few pounds and force people back into work. Our society is truly broken.
Some of you may be aware of my girlfriend Nicola Jeffery’s story. Many will be aware of her seizures. Now I believe I may have worked them out. But it’s going to cost to prove this. And we need some financial help from the public.
A complex picture
You can read all about Nicola’s medical story here. In short, she lives with:
- Hypermobile Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorder (hEDS/HSD): diagnosed in 2017 as hEDS, updated in 2018 to HSD due to change in diagnostic criteria, then re-diagnosed as hEDS in April 2019.
- Myalgic Encephalomyelitis (ME): diagnosed in 2018.
- Postural Orthostatic Tachycardia Syndrome (POTS): diagnosed in 2018.
- Deformations in left foot, left leg shortness: diagnosed in January 2019.
- Polycystic Ovary Syndrome: diagnosed in 2011.
- Temporomandibular Joint Dysfunction: diagnosed in 2008.
- Craniocervical Instability (CCI): diagnosed in March 2019.
- Atlantoaxial Instability (AAI): diagnosed in March 2019.
- Hypotension: diagnosed in March 2019.
- Megaloblastic Anaemia: diagnosed April 2019.
- Peripheral Neuropathy: diagnosed April 2019.
- Chronotropic Incompetence/Intolerance: diagnosed May 2019.
- Hypothyroidism, diagnosed May 2019.
- Mycotoxicosis via four different mycotoxins: diagnosed May 2019.
- Non-epileptic tonic clonic seizures with apparent focal autonomic aware prodromals: present for at least a decade. Formally first assessed in 2011. Originally put on Lamotrigine. Rediagnosed as non-epileptic in 2018.
- Presence of Cytomegalovirus (CMV) and Epstein-Barr Virus (EBV): reported via bone marrow trephine biopsy in 2018.
I gave up work full time to support Nicola. You can read more about that decision here. In short, we are currently on a complex treatment plan for the ME. This is starting to show some results, with improvements across various clinical measures. But progress is slow.
What we still haven’t got to the bottom of are Nicola’s seizures.
Seizures: blighting her life
This is one of them:
She had one this morning (Wednesday). They have blighted her life for many years and no neurologist can work out what’s causing them.
At first, she was told she was waking up incontinent and in severe pain due to the birth of her child, and her now incorrect diagnosis of Fibromyalgia. Her previous partner witnessed a few of them. Her son, a toddler at the time, even had to call an ambulance during one episode.
But since we have been together, I have documented them fully.
The challenge for Nicola is multi-stranded. She lives with ME and hEDS, which makes her muscles weak and prone to exhaustion after exertion. Having a seizure, where her whole body contorts and strains, has a devastating effect on her. It leaves her effectively incapacitated for up to five days.
They severely impact her already damaged cognitive function. She has chipped many of her teeth and due to the hEDS her bottom front ones are now extremely loose. Moreover, she is of course at risk of Sudden Unexpected Death in Epilepsy (SUDEP).
Now, I think I know what is causing them. But to get it properly diagnosed, we’re going to need some help. This is in the hope that we can rid Nicola of one of the most distressing aspects of her illnesses.
In short, she lives with Hypocapnia, also known has Hypocarbia. This is essentially below-normal levels of carbon dioxide (CO²) in her blood. We discovered this during a two-day Cardiopulmonary Exercise Test (CPET).
Hypocapnia has two major effects. It firstly reduces arterial blood pressure. We know Nicola’s blood pressure is already hypotensive. Secondly, it causes Respiratory Alkalosis, where the blood becomes too alkaline. Normally, Hypocapnia is caused by hyperventilation. But due to the CPET testing in Nicola’s case we know this is not the cause.
What I think it happening to Nicola is the following:
- Her mitochondria dysfunction, Chronotropic Incompetence and Megaloblastic Anaemia are causing cardio and pulmonary dysfunction. We know from various testing, for example, that Nicola’s mitochondria fail on minimal exertion and that her red blood cells do not carry oxygen around her body correctly.
- Specifically, she has Ventilation/Perfusion Mismatch, where a part of her lungs get oxygen without blood flow or blood flow without oxygen.
- This results in Hypocapnia.
- It then causes her blood pressure to drop extremely low, probably due to vasodilation. It also causes her blood to become very alkaline.
- The knock on effect is restricted blood flow to her brain. This is known as Cerebral Hypoperfusion.
- This vasoconstriction leads to the seizures, both the focal autonomic aware and tonic clonic ones.
We know there is a link with her blood pressure. I’ve identified that the night before she has a seizure, her systolic/diastolic blood pressures drop by, on average, 8% and 19% respectively.
So, we can now predict when she will have one or both of her seizures. But I do not have definite answers.
Another long journey
To get these, and finally rid her of these distressing episodes, we will need to find a neurologist, cardiologist, haematologist and pulmonary expert who are willing and open minded enough to do all the necessary testing. It will involve more blood tests, and numerous diagnostics the night before, during and after a seizure.
None of this, from my theoretical diagnosis to the investigatory work, is available on the NHS. Nicola’s seizures have already been labelled “psychosomatic” and “functional” (ie. all in her head) by several neurologists. We will not get help there.
Most of Nicola’s treatment is now private, due to the lack of recognition and clinical care for her illnesses on the NHS. You can read more about that here. We currently have the money to fund this.
But to investigate Nicola’s seizures fully we need help. It’s an unbudgeted expense in her treatment plan.
We need your help
So, we are asking people to donate via my PayPal to support us in trying to get to the bottom of this. Once I have an idea of cost I’ll publish this. I know a standard consultant appointment will be at least £250-£300.
We both understand how hard things are for many people at present. But anything you can donate would be greatly appreciated.
Nicola’s life has been blighted by chronic ill health for too long. If we can solve her seizures, then one aspect of her complex and debilitating medical picture will finally be resolved.
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.
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.
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).
- Megaloblastic Anaemia.
- Peripheral Neuropathy.
- Chronotropic Incompetence.
- T3 Hypothyroidism.
- 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:
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.
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.
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.