radiofree.asia

Category: Disability

  • Daily Mail just fired the starting gun for the new DWP war on disabled people

    The Daily Mail has had a busy couple of days spewing out scapegoating propaganda for its billionaire owners and the political class. The Canary’s HG reported on its vile Islamophobic spin over a Muslim man’s courageous, selfless actions. But before that, it was shilling for the Department for Work and Pensions (DWP). Because, feast your eyes on the latest Office for National Statistics (ONS) employment rate figures.

    For the right-wing propaganda machine, it can mean only one thing. It’s time to crack out its favourite old chestnut: welcome back to “workshy Britain”.

    DWP: Daily Mail digging up ‘workshy’ rhetoric

    On Tuesday 13 August, the ONS published a collection of data on the UK labour market. It explored the number of available vacancies, the employment rate, and people’s earnings across the UK, among other things.

    Naturally, the Daily Mail honed in on the data showing the rates of unemployed and ‘economically inactive’ people in the country. Its baiting headline blared:

    Sir Keir Starmer urged to ‘get a grip’ of workshy Britain – as nearly 10 million Brits are out of work but not looking for a job despite companies struggling to hire staff

    Ironically, the Daily Mail followed this with an article unpacking the multitude of reasons people were not in work. Some were studying for instance, while others were looking after family, off work temporarily sick, or living with long-term health conditions.

    Together, these comprised over 7.3 million of the total 9.4 million economically inactive people. In other words, the bulk of the Daily Mail’s “workshy” Brits are anything but.

    They are students, or vastly undervalued and often unpaid carers, plugging the gaps of the broken healthcare and welfare systems. They’re chronically ill people that both are also letting down.

    Predictably, the Daily Mail also slipped in that the long-term sickness figures had hit:

    a near-record 2.803million

    Unsurprisingly, the Daily Mail didn’t draw the connection with the Tories’ abysmal “let it rip” pandemic policy:

    If it had made the link, it might have dug up the fairly recent ONS data. This plainly showed the results of the toxic Johnson government’s eugenicist mass disabling approach. Specifically, in April, the ONS said that 3.3% – two million people – in England and Scotland were living with long Covid.

    Of course, while that doesn’t mean that all two million of those living with it are not working, it’s a fairly obvious cause for the overall rise in economic inactivity. Given Covid is still rife, this is only likely to continue to rise too.

    Long Covid and the ‘psych lobby’

    Instead then, the Mail doubled down on its crusade against chronically ill and disabled people. Following these statistics, it wrote that:

    Earlier this year the Tories announced plans to overhaul disability benefits which included telling individuals with ‘mild’ mental health problems to get therapy and return to work.

    Sir Keir Starmer said at the time that he supported reform and ‘the principle that those that can work should work’ but mental health campaigners said the Tory stance threatened incomes of the disabled.

    First up, let’s make this abundantly clear: mental health conditions are real, valid, and extremely serious. In no way should the Daily Mail – or the Tories – trivialise people living with them. Next, living in this neoliberal capitalist hellscape of the right-wing’s design is a huge part of why so many people are going through mental health crises in the first place. The Tories’ class war austerity, racism, ableism, and other bigotry emboldened and running rampant makes for a perfect storm.

    Then, the lack of mental health support services compounds this in a vicious circle of violence. Needless to say, if people are economically inactive for mental health reasons, it’s a reflection on appalling government, after appalling government, NOT the individuals. The government should not be forcing people living with mental health conditions into work, period.

    However, the fact is, the ONS figures didn’t actually detail what long-term health conditions people were living with. In other words, the Daily Mail plucked people living with mental health conditions out of its arse, simply to punch down on them.

    Of course, the irony is also not lost on us that it seized on so-called people living “with ‘mild’ mental health problems” in the context of the surging rates of long Covid either.

    Specifically, a vocal lobby has been psychologising patients living with the similar and sometimes overlapping chronic illness myalgic encephalomyelitis for decades. Notoriously, a DWP-funded, but deeply flawed piece of junk science set the stage for medical professionals to stigmatise, psychologise, and gaslight myalgic encephalomyelitis (ME/CFS) patients. Already, they’re doing the same to people living with long Covid.

    Daily Mail setting the demonising agenda for the DWP

    And don’t look now, it’s 2024, but the hateful tabloid is STILL using the discriminatory, homogenising language “the disabled”. Obviously, it’s not surprising the outlet is lumping each individual disabled person into one, uniform, amorphous group – because it hardly recognises us as people trying to live our own independent, fulfilling lives.

    A few people on X wondered who exactly “urged” Starmer to “get a grip”:

    A poster who took one for the team and actually read through the pathetic excuse for journalism (as I’ve had to), pinpointed the culprit. Conveniently shrouded by the Mail’s strategically positioned passive voice, it was of course, a fucking Tory:

    Why this matters? Because here’s a shining example of why Starmer’s red rosette Tories have shifted increasingly to the right. The right-wing corporate media have set the agenda and shrunk the ‘Overton Window’ of politically permissible. All that’s left is for power-hungry grifters to sell their souls to the capitalist billionaire whims of the day. Invariably, that always involves lining their pockets, while demonising marginalised communities.

    And so far, so good for the establishment elite with rightwing Liz Kendall at the DWP’s helm. Notably, if the Daily Mail’s rhetoric and statistics sounds familiar, that’s because it is. One week into the new Labour government and she was having a little field-trip to a Jobcentre in Leeds. As the Canary previously reported, there she highlighted the 2.8 million people unable to work owing to long-term sickness. Then, in another breath, she declared:

    It’s not good enough that the UK is the only G7 country with employment not back to pre-pandemic levels.

    It’s not exactly hard to read between the lines. As one person on X highlighted that this “workshy” rhetoric is actively gaslighting chronically ill and disabled people too:

    At the end of the day, it’s the Daily Mail doing what it does best. That is, paving the way for the now Labour-run ruthless DWP to ramp up its war on chronically ill and disabled people.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • It’s Gastroparesis Awareness Month – yet we need to talk about EDS and ME/CFS

    August is Gastroparesis Awareness Month. However, two conditions gastroparesis is often found in are also often overlooked: EDS and ME/CFS.

    Gastroparesis Awareness Month: what is it?

    Gastroparesis is a disorder characterised by delayed gastric emptying without any mechanical obstruction. The stomach’s muscles and nerves fail to function properly, leading to improper grinding of food and delayed transit to the small intestine. Symptoms include nausea, vomiting, bloating, early satiety, and abdominal pain. The chronic nature of these symptoms can result in malnutrition, weight loss, and severe dehydration, necessitating medical intervention.

    Several factors contribute to the development of gastroparesis, with the most common being damage to the vagus nerve, which controls the stomach muscles. This nerve damage can be caused by conditions such as diabetes, where prolonged high blood sugar levels harm the nerves throughout the body, including those in the stomach.

    Another significant cause is post-surgical complications, particularly after surgeries involving the stomach or esophagus, where inadvertent nerve damage can occur. Certain viral infections have also been linked to the onset of gastroparesis, potentially leading to temporary or chronic impairment of stomach motility.

    Medications, particularly those that slow down gut motility, such as narcotics or some antidepressants, can contribute to the development of gastroparesis. Additionally, underlying neurological disorders like Parkinson’s disease and multiple sclerosis, which affect the nervous system, can lead to this condition.

    However, there is also a genetic, hereditary chronic illness in which gastroparesis is also a cluster syndrome.

    The Ehlers-Danlos syndromes

    The Ehlers-Danlos syndromes (EDS) encompass a group of connective tissue disorders characterised by, but not limited to:

    • Joint hypermobility (but not always).
    • Elasticity of the skin (but not always).
    • Craniocervical and atlantoaxial instabilities.
    • Postural orthostatic tachycardia syndrome (POTS).
    • Mast cell activation syndrome (MCAS).
    • Fatigue.
    • Easy bruising and scarring.
    • Subluxations and dislocation of joints.
    • Cognitive impairment.

    While the musculoskeletal manifestations of EDS are well-documented, its impact on the gastrointestinal system is frequently underestimated. One of the significant, yet often overlooked, gastrointestinal complications associated with EDS is gastroparesis, a condition that significantly affects the quality of life for those afflicted.

    The link between EDS and gastroparesis stems from the fundamental nature of connective tissue dysfunction in EDS. The connective tissues, which provide structure and support to various organs, including the gastrointestinal tract, are abnormally formed in individuals with EDS. This abnormality can extend to the nerves and muscles of the stomach, impairing their function and leading to gastroparesis.

    In EDS, the collagen and other components of connective tissue are defective, leading to increased laxity and fragility. When this defective connective tissue affects the autonomic nervous system—a part of the nervous system that controls involuntary actions such as the movements of the gastrointestinal tract—patients may experience dysautonomia. Dysautonomia, a common feature in EDS, can impair the vagus nerve’s ability to regulate stomach motility, directly contributing to gastroparesis.

    Moreover, the muscular layer of the stomach may also be affected. The smooth muscles that facilitate the peristaltic movements required for gastric emptying might be compromised due to the defective connective tissue, exacerbating the symptoms of gastroparesis.

    Clinical manifestations, diagnosis, and treatment

    The clinical presentation of gastroparesis in EDS patients can be varied but typically includes chronic nausea, vomiting, bloating, and abdominal pain. These symptoms are often mistakenly attributed to other gastrointestinal disorders, leading to delays in the correct diagnosis. Given the overlap of symptoms with other gastrointestinal conditions, a high index of suspicion is necessary for early detection.

    Diagnostic procedures for gastroparesis typically involve gastric emptying studies, such as scintigraphy, breath tests, and SmartPill, a wireless motility capsule that measures pH, temperature, and pressure as it passes through the gastrointestinal tract. Endoscopic examinations may be conducted to rule out mechanical obstructions.

    Managing gastroparesis in EDS patients requires a multifaceted approach, as the condition is chronic and often refractory to treatment. Dietary modifications are the first line of management. Patients are advised to consume small, frequent meals that are low in fiber and fat to ease gastric emptying. Liquid meals and nutritional supplements may also be beneficial.

    Pharmacological interventions include prokinetic agents like metoclopramide and domperidone, which enhance gastric motility. Antiemetic drugs can help control nausea and vomiting. However, these medications may have limited efficacy and potential side effects, necessitating careful monitoring and adjustment by healthcare providers.

    In severe cases, more invasive treatments may be considered. Gastric electrical stimulation, where mild electrical pulses are delivered to the stomach muscles, can be effective in some patients. Surgical options, such as jejunostomy, where a feeding tube is placed directly into the small intestine, are considered for those with refractory symptoms and severe malnutrition.

    The ME connection

    All of this also overlooks another illness where gastroparesis manifests. That’s myalgic encephalomyelitis (ME/CFS).

    As ME Research UK notes:

    Many people with ME/CFS experience abdominal pain, nausea, bloating, and alternating constipation and diarrhoea. These gut symptoms are also seen in conditions known as ‘disorders of gut brain interactions’ (or DGBI) such as irritable bowel syndrome (IBS), and recurring symptoms of an upset stomach and indigestion (functional dyspepsia).

    DGBI can affect different parts of the digestive system, and like ME/CFS, are more common in women than men.

    Key mechanisms of DGBI are thought to include:

    • Slower movement of food from the stomach to intestines (gastric dysmotility, delayed gastric emptying or “gastroparesis”);
    • Impaired ability of the stomach to relax to accommodate a meal (impaired gastric accommodation);
    • Low levels of inflammation;
    • An imbalance of the healthy microbes (such as bacteria and viruses) in the gut.

    While the potential mechanisms of DGBI have been identified, gut symptoms in ME/CFS remain under-researched. In particular, there is a lack of research in people with ME/CFS considering the body’s response to consumption of food, and the exact digestive symptoms experienced.

    In ME/CFS, gastroparesis can contribute to the condition being life-threatening – as patients end up at risk of starving to death.

    The importance of research

    Despite the significant impact of gastroparesis on individuals with EDS and ME/CFS, it remains under-recognised in clinical practice.

    Increased awareness among healthcare providers is crucial for early diagnosis and management, which can substantially improve patient outcomes. Further research is needed to better understand the pathophysiology of gastroparesis in EDS and ME/CFS and to develop more effective treatments.

    Collaborative efforts between gastroenterologists, geneticists, and other specialists are essential to provide comprehensive care for EDS and ME/CFS patients with gastroparesis. Support groups and patient advocacy organisations also play a vital role in raising awareness and providing resources for affected individuals.

    In conclusion, gastroparesis is a debilitating and often overlooked complication of the Ehlers-Danlos syndromes and ME/CFS. There must be urgent research and development to ensure this no longer remains the case.

    Feature image via the Envato Elements

    By The Canary

    This post was originally published on Canary.

  • Maeve’s inquest was a whitewash and the coroner betrayed everyone living with ME/CFS

    On Friday 9 August, the inquest into the death of very severe myalgic encephalomyelitis (ME/CFS) patient Maeve Boothby O’Neill concluded that she died of natural causes because of her ME.

    It was always unlikely that the Royal Devon and Exeter hospital that treated her was going to be found negligent. However, the coroner in the case has made the situation for everyone living with this devastating and potentially deadly illness in the UK a whole lot worse.

    Maeve: the most horrific of cases

    If you’re familiar with the case of Maeve, then I won’t need to furnish you with the details of how utterly heartbreaking and horrific it was. She died – effectively from starvation – on 3 October 2021, aged 27. Her death came after what can only be described as neglect, malpractice, and in some instances abuse, by the NHS.

    Her mother Sarah said in her witness statement submitted to the inquest:

    I believe the evidence shows Maeve is likely to have died from malnutrition and dehydration, because she had severe ME. I therefore believe her death was both premature and wholly preventable. As it is likely that her death could have been prevented, I am hoping the inquest will try to ascertain how three separate admissions to the Royal Devon and Exeter NHS Hospital Trust (RDE) failed to save her life (chronology of events)…

    As an unqualified but concerned observer, it seemed to me the RDE did not respond to the severity of Maeve’s presentation, and failed in its duty of care and missed important opportunities to preserve the right to life; it did not refer to published guidance on ME, and it did not take available specialist expert advice on how to prevent malnutrition in severe ME.

    Sadly, this was not the outcome. In fact, some of the coroner’s conclusion may have just compounded the dire state for people with ME in the UK.

    A “true illness” is utterly subjective

    ITV News reported that assistant coroner Deborah Archer – barely fit for purpose and clearly either not paying attention to what was being said or not understanding it – said:

    she hoped important lessons will be learned from Maeve’s death and she said she did not find any of the clinicians who treated Maeve did not believe ME was a ‘true illness’

    Contrary to what some people are saying online, the coroner did NOT conclude ME was a “physical illness” – just a “true” one. Archer completely missed the point. The entrenched problem with ME is NOT whether doctors think it is a “true illness”. It is whether they believe ME is psychiatric, not physical.

    On day five of the inquest, Dr Kashyap Patel who had been involved in Maeve’s care at the hospital, was giving evidence. When asked by the coroner whether ME was real, he said he believed it had “physical symptoms” – but fell short of stating it was a physical illness. Sean O’Neill pressed him on whether he believed ME was a physical or psychiatric condition. Patel said:

    As far as I understand the cause is not known. I should not speculate. I’m not going to speculate how much is this, how much is that [physical versus psychiatric] – the fact we are all sitting and talking about it tells us we don’t know…

    We should not speculate and do what we can based on what we know at that particular time…

    I’m not in a position to speculate on the evidence [about ME] and give my opinion on it… the fact that everyone is arguing on it means we don’t know… I did not even think, fight, argue, with the diagnosis Maeve had… because… the point was to make her better at the time. Knowing what caused it would not have influenced what I or people like me would have done.

    That wordsoup effectively meant that Patel would not commit to whether or not he believed ME had a physical or psychiatric cause, or a combination of both.

    The inquest was littered with other examples of this – from the GP practice including psychiatry on Maeve’s care pathway to one consultant saying she had “hypermania” via another who treated Maeve at the hospital saying:

    I do not know what the cause of ME is. Therefore I’m not able to say if it is or is not a physical condition. That isn’t at all the same as saying I believe it isn’t… I find the literature generally to be unclear. For me the focus needs to be on what management does a patient need who is suffering with that diagnosis.

    So, what Deborah Archer has done is merely compound the debate around whether ME is physical or psychiatric. She has given credence – and leverage – to the psychiatry lobby which would have that ME is a condition that primarily needs to be treated with exercise and talking therapies.

    Doubling down

    Archer then compounded this by saying:

    In conclusion there is no known treatment of ME… The reality of this case is it is not possible for me to say if any treatment could’ve halted her decline – I hope lessons will be learned in the hope future deaths can be prevented.

    In saying this, she threw Dr William Weir – one of, if not the, leading ME expert in the UK – further under the bus. This came after his peers in the medical profession at Royal Devon and Exeter hospital had already put him under there, after passively-aggressively disparaging him throughout the inquest.

    However, crucially Deborah Archer has also set back the entire ME community. By saying there was nothing more the alleged medical professionals at Devon and Exeter could have done, she has given other hospitals a free pass to dismiss other very severe ME patients, their families, and people like William.

    Carla Naoum, currently being mistreated, neglected, and abused in West Middlesex hospital being a case in point. Doctors there are also ignoring William Weir’s repeated advice and Carla is now in a perilous state.

    Knowing her situation first hand, I know it has been near-identical in many respects to Maeve’s. The hospital’s approach to feeding, for example, has been very similar – with the same, incorrect assumptions around issues like aspiration and a refusal to change from an NG tube or to alter the position at which she lies.

    Archer’s conclusion will effectively give legitimacy to West Middlesex’s approach of ignoring the family and ME experts, and treating Carla in the way they think is appropriate, despite it making her demonstrably worse. This now is, thanks to Archer, ‘because there’s nothing that West Middlesex can do that they’re not doing already’.

    There was plenty more doctors could have done for Maeve – except they chose to ignore William, Sarah, and Maeve herself. Archer has now legitimised NHS doctor’s entrenched dogma surrounding ME. This will not be changing anytime soon – because of the lackluster NICE guidelines and the likelihood the government’s ME Delivery Plan will also be a whitewash.

    An inquest was not bringing Maeve back – but it could have changed things for other people with ME

    Ultimately, though, Maeve’s inquest was never going to be a watershed moment for the ME community. As former barrister and person with ME Valerie Eliot Smith wrote for David Tuller’s Virology:

    An inquest is not a public inquiry, as the coroner in this case has emphasised. The remit of an inquest is much narrower and confined to the death in question…

    An inquest is not a trial nor is it about apportioning blame. It is confined to establishing the facts and reaching a conclusion in a statutory form.

    Anyone watching knows that Royal Devon and Exeter hospital catastrophically failed Maeve due to misogyny, dogma, negligence, ignorance, and entrenched God complexes.

    An inquest was never going to address that.

    Nor was it going to bring Maeve back.

    However, what it and the coroner have done is muddied the already murky waters of just how the NHS supports people living with ME even further. This leaves people with severe and very severe ME in an even more perilous position than they were already.

    Featured image supplied

    By Steve Topple

    This post was originally published on Canary.

  • The DWP just gave a harmful back-to-work contract to notorious Serco

    Notorious outsourcing company Serco has tightened its grip on the welfare state. Another contract from the Department for Work and Pensions (DWP) is funnelling a further £175m to the controversial firm. In this instance, it will expand the private corporation’s role delivering a key government mandatory Universal Credit work programme – the ‘Restart Scheme’.

    However, the DWP has awarded this after a litany of private sector providers’ – including Serco – abject failures with the scheme to date. Moreover, it means the infamous firm now holds current DWP contracts to the tune of well over half a billion.

    DWP: Serco tightens its grip on the welfare state

    On 7 August, Serco announced the DWP had extended its contract for the government’s Restart Scheme.

    In a nutshell, the DWP is contracting private sector providers to host twelve-month tailored employment support packages for certain benefit claimants. The DWP makes this a mandatory requirement for some claimants to participate in to receive their benefits. And notably, it can sanction those that do not comply with the scheme.

    Since June 2021, a slate of private firms, including other notorious names like Maximus and G4S, have run the scheme in different areas across England and Wales. Serco won the contracts for both the West Central region, and Wales. It was originally for three years. Now, the DWP is continuing the scheme for two further years, and has extended Serco’s contract for these areas.

    However, from early on, the scheme wasn’t standing up. In June 2022, the Guardian reported that the scheme had put only 7% of its participants into work. This emerged in a parliamentary written question put by then DWP shadow minister Alison McGovern to the department. Up until the end of April 2022, just 16,180 (7%) had left the scheme to start work, or because they’d moved off of Universal Credit, or out of the Universal Credit Intensive Work Search group – meaning the scheme had failed to help 93% of participants into work.

    In other words, in its first ten months, the scheme had been an utter failure. Now, the situation isn’t looking much better.

    DWP statistics on the Restart Scheme

    The DWP now produces regular statistical releases for the Restart Scheme. Significantly however, these categorise the information differently than Davies’s answer to the written question. In particular, rather than the broad ‘leavers’ category, which didn’t solely include those who entered work, the DWP publishes figures for those who have entered work during and after the scheme.

    In theory then, this provides more detailed information on the results of the scheme so far. Notably though, this doesn’t give separate statistics on those who’ve left the scheme, or the reasons for doing so.

    Instead then, it uses data on participants meeting minimum and stretch targets the DWP has set for providers to achieve. Specifically, these set out the number of participants providers should help into sustained work – its so-called ‘job outcome’. It defines this as achieving the equivalent of 16 hours for 26 weeks at the National Living Wage. In 2022, it reviewed these targets, setting the ‘Minimum Performance Target (MPT)’ at 27% of participants. Its stretch goal – the ‘Tender Performance Target (TPT)’ – is 36% across the lifetime of the scheme.

    These are obviously low targets to begin with, but what’s worse is that providers are currently falling short of them anyway. Of the 610,000 people who have started the scheme to date, just 142,700 – 23% – of people have achieved the DWP’s ‘job outcome’. This means that the scheme has still failed to help 77% – more than three-quarters – of participants into a job paying the legal minimum wage.

    Not hitting bare minimum targets

    Of course, this will include those who have only just started the scheme, so doesn’t provide a clear picture. It’s why the DWP statistics show the percentage of participants meeting this at six month, twelve month, and 21 month intervals. The 21 months includes the twelve-month scheme, six months of earnings, and a three month ‘data settlement’ period in which employers or the employee report their earnings.

    At six months, which naturally provides the largest span of data, the scheme was meeting a third of the MPT. That is, between June 2021 and October 2023, just 9% of participants had met the DWP’s set ‘job outcome’. By contrast, at twelve months, it did markedly improve, but was still falling foul of the DWP’s minimum target, at just 23%. This also only covered participants up to April 2023.

    For 21 months, it’s a little rosier at 31%, finally hitting MPTs. However, this still doesn’t meet the stretch target. Notably, the DWP based this threshold on what providers claimed they could achieve in their bids for the contracts. As such, they’re still hugely under-delivering on their promises. More importantly, this data only shows a year’s worth of the scheme, until July 2022. It’s therefore very limited analysis at any rate.

    But here’s the thing – the DWP never anticipated its multi-billion pound employment support programme would actually result in many more people finding work anyway. By the department’s own projections, it estimated that Restart would help just six out of every 100 participants into “sustained work” than would have found it without the scheme.

    The department has yet to conduct a full evaluation of this and whether it has met this projection. So these DWP statistics are failing to show how many of those achieving its targets would have done so anyway without the support of the scheme.

    Exploitative employers and poverty wages

    None of this is to mention that the DWP’s ‘job outcome’ is also based on the government’s disgracefully paltry so-called National Living Wage. Most notably, the government hasn’t calculated this in line with the cost of living. The Living Wage Foundation has highlighted that it’s £1,092 short of its estimated real living wage. This is the base amount it calculates people would need on average for a decent standard of living. For London, the gap was much greater. The National Living Wage fell £3,334.50 short of the London Living Wage.

    Needless to say then, if Restart’s goal was to reduce the number of people claiming benefits, it also hasn’t done this. Specifically, similar proportions of people participating in the scheme remained on Universal Credit to those not on the scheme.

    These were the findings of a DWP evaluation of the Restart Scheme from May 2024. On behalf of the department, Ipsos and the Learning and Work Institute (L&W) conducted a series of surveys on a pool of scheme participants, employers, and contractors. In particular, it found that:

    The survey showed that while a greater proportion of Restart participants were in work than non-participants, similar proportions of participants and non-participants were claiming Universal Credit (UC). This suggests that the outcomes achieved were not always sufficient to enable eligible participants to stop claiming UC.

    In other words, Universal Credit is simply subsidising the poverty pay of employers.

    Not the full picture

    Overall, the evaluation concluded that:

    The findings from this research, while not an impact assessment, suggest that the Restart Scheme supported participants to achieve positive outcomes both in terms of sustainable employment outcomes and wider outcomes (including well-being, qualifications, proximity to the labour market and job searching skills). Evidence from the longitudinal cohort study suggests that Restart participants were more likely to be in work than non-participants.

    However, this wasn’t the full story either. For one, as the report itself acknowledged, it wasn’t a proper ‘impact assessment’. Moreover, the devil is in the detail – and this ‘evaluation’ was no exception. Notably, it also stated that the non-participants it utilised for its comparison were unsuitable as a control group. This was because:

    The demographic profile of this group is different to that of Restart participants, which may have contributed to them not starting the scheme.

    For instance, the two factors with the highest divergence were education and a person’s health condition. While 22% of participants had a degree level education or higher, just 13% of non-participants were the same. Meanwhile, 63% of non-participants lived with a long-term health condition, whereas 53% of participants did.

    Obviously, these disparities made comparisons wholly inappropriate.

    Harming chronically ill claimants

    What’s more, the scheme has also failed participants from marginalised groups the most. Perhaps unsurprisingly, the most pronounced was chronically ill and disabled people. It identified that being disabled (including learning disabled) and living with a health condition was the biggest barrier to employment.

    Worse still, Restart likely actively made chronically ill participants’ health worse. Specifically, the evaluation stated how:

    Among those in this group who experienced health conditions as a barrier to work, this barrier was more likely to develop than be removed during the 12-month period.

    In other words, it suggests the Restart may have actually exacerbated people’s health conditions. However, we obviously can’t solely attribute people’s worsening health to the scheme alone. This is because there may be other factors at work that the analysis did not assess.

    Even so, it challenges the narrative that work intrinsically improves people’s long-term health. Many chronically ill and disabled people know this isn’t the case, and have routinely called out this ableist rhetoric, dressed up like caring.

    Given the new Labour DWP’s fixation on forcing down the numbers of long-term sick people out of employment, the Restart extension with private sector firms like Serco could be cause for concern.

    Serco sweeps up half a billion of DWP contracts

    Despite all this, the DWP has now extended the scheme, and Serco is once again cashing in. Of course, it cements the private sector profiteer’s control over key arms of the welfare state even further.

    Currently, including the extended Restart Scheme, it holds two further active contracts with the DWP. As the Disability News Service (DNS) reported in October, one of these is to carry out Personal Independence Payment (PIP) and WCA assessments. Serco boasted its contract with DWP was worth around £350m.

    Alongside this, the department gave Serco part of the contract for its Commercial Agreement for Employment & Health Related Services (CAEHRS) programme. Again, this presents itself as an employment support scheme. In effect though, it revolves around pushing chronically ill and disabled people into work. In this instance, Serco and other selected contractors are in charge of procuring health related services to do this.

    Notably for this, the DWP awarded the £7.5bn contract to 28 separate providers. The exact slice the department is forking out to Serco for this isn’t clear. However, it’s likely millions more on top of its two other contracts. In other words, it means that Serco has its mitts on well north of half a billion pounds worth of the UK’s welfare state.

    Profits for the private sector

    New Labour government, the same old infamous profiteering firm sinking its claws further into the welfare state. Another DWP contract worth hundreds of millions puts paid to the idea that Labour’s Back to Work agenda is anything other than a money-making scheme for parasitic private sector capitalists.

    But as always, the DWP-private outsourcing company nexus will harm marginalised people the most – shunting them into low-paid work whatever the cost.

    Feature image via YouTube – Young Scot Corporate/the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • This Severe ME Day, patients are still dying in hospitals as the world walks by

    Another year, another Severe Myalgic Encephalomyelitis (ME/CFS) Day will pass with NHS hospitals abusing, neglecting, and psychologising patients living with the devastating chronic illness.

    Thursday 8 August was Severe ME Day. Across X, patients, carers, friends, family, and advocacy organisations have shared stories of its tragic impacts for so many. But after eleven years of annual events marking it, their posts only reinforced just how little has changed.

    Severe ME Day

    ME is a chronic systemic neuroimmune disease which impacts at least 65 million people worldwide – and that is likely a vast underestimate. Similar to, and sometimes overlapping with long Covid, it affects nearly every system in the body and causes a range of symptoms that impact patients’ daily lives. These include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions, among other significantly debilitating symptoms.

    Significantly, post-exertional-malaise (PEM) is the hallmark feature of ME/CFS, which entails a disproportionate worsening of other symptoms after even minimal physical, social, or mental activities.

    Severe ME impacts approximately 25% of people living with the disease. In these cases, people living with severe ME/CFS are mostly, if not entirely permanently bed-bound. What’s more, they are sometimes unable to digest food, communicate, or process information.

    8 August was Sophia Mirza’s birthday. In 2003, doctors sectioned her under the Mental Health Act and incarcerated her in a mental health hospital without even basic nurse care. After fighting at tribunal, the hospital released two weeks later. However, it caused her Severe ME to worsen, and in 2005, Sophia died. She was the first person in the UK to have ME recorded as her cause of death.

    So since 2013, the ME community and their carers have marked it every year. They do so in memory of Sophia, and many others who have since lost their lives to this devastating disease.

    People like 27-year-old Maeve Boothby O’Neill. The Canary has reported on her inquest that took place between the 22 July and the 2 August. Appalling trivialisation of her condition, arrogant medical professionals, and hospital staff’s culture of psychologisation led to her death in October 2021. Her inquest underscored the way the NHS treats ME patients to this day.

    A day in the ‘life’?

    So, the annual severe ME event provides an opportunity for people living with it, and their loved ones to speak out about all this and more. This Severe ME Day, many have taken to X to express their grief, anguish, and rage.

    Countless shared heartbreaking accounts of their ‘days in the life of’ existing as a severe ME patient:

    Friends, family, it can take anyone. Loved ones expressed the loss of people dear to them to the awful chronic illness:

    Some shared photos and artwork by people living with severe ME:

    NHS failures continue unchecked

    Carole Bruce, who’s lived with severe ME for over three decades, detailed the terrifying unpredictably of the debilitating disease. Moreover, through a health scare, she stressed the systemic NHS failings for severe ME patients:

    Meanwhile the ME community on X took the chance to express their heartfelt thoughts for people like 18-year-old Millie McAinsh and Maria:

    They also raised their concerns that the NHS is STILL abusing women like Carla Naoum and Karen Gordon as you read this:

    The global impact

    Of course, the global event and the international voices on X also drive home the world-spanning devastation severe ME is wreaking. Crucially, the World ME Alliance highlighted the widespread abuse and neglect by healthcare and welfare systems across the globe:

    Because, the fact is, it’s not just the NHS and UK government catastrophically failing people living with severe ME. Anna – who has lived with severe ME for over two decades – posted from Australia:

    The Canary has previously written about Anna’s unconscionable circumstances. In one of the richest countries in the world, public services are leaving – and trapping her further – in an abusive household. As we reported in May:

    Anna is unable to get the rest she needs while she is trapped in domestic abuse. In turn, since she is sick, she is unable to escape this abusive situation. Ironically, doing so might enable her condition to improve. All the while, abusive doctors, systemic neglect by the healthcare system, and domestic abuse services which fail disabled survivors, is maintaining this. Meanwhile, a welfare system which coerces people living with ME/CFS into harmful treatments also perpetuates this.

    Since then, the domestic, healthcare, and welfare system abuse has only got worse. Unfortunately, the gaping holes in the social safety net have meant no appropriate support has been forthcoming. It has left Anna still searching for a way out – to little avail so far. You can read more about Anna’s situation here. Please reach out to Anna if you can help her get to safety, or provide advocacy support.

    Where are the big ME charities?

    Just because ‘pacing’ is the only tool available to people living with ME, doesn’t mean progress should be unhurried and limited.

    The UK’s main ME organisations know a thing or two about pacing. That is, at least insofar as them dragging their heels on taking concrete, urgent action. A glacial pace, if you like. This past year, while the Chronic Collaboration and people with ME across X were helping Millie, Carla, and their families, they were nowhere in sight. So it’s hardly a surprise they have little useful to say this Severe ME Day.

    Action for ME largely quote-shared posts from other people and organisations:

    Meanwhile, the ME Association did at least post this Times article amplifying long-term US severe ME patient Whitney Dafoe’s story:

    In this, Dafoe explained how under the NHS’s current care, he would be dead. However, US healthcare providers gave him the correct feeding tube, that might have saved Maeve’s life.

    And don’t say the pair never do anything for people with ME. Here’s a half hour, 5-question multiple choice quiz for GPs on severe ME:

    An optional quiz – that’ll really turn things around.

    Patient-led grassroots advocacy a reason for hope

    Despite their inaction, other grassroots advocacy groups are actually picking up the pace this year.

    As the Canary reported ahead of its launch, ME Foggy Dog and the Stripy Lightbulb Club CIC have launched a brand new campaign for Severe ME Day. Founder of both organisations Sally Callow posted in her PJs about the fresh fundraising BED for Severe ME campaign:

    Importantly, Callow’s campaign is aiming to ramp up support for a new NHS protocol for severe ME. This would – in theory – help to tackle the inadequate, inappropriate care NHS professionals persistently mete out to severe ME patients. And given the continuingly abysmal NHS treatment, it is desperately needed.

    Meanwhile, Unite to Fight – a joint long Covid and ME organisation shared a new video to shed light on the reality of living with severe ME:

    In May, the group hosted the first ever joint long Covid and ME conference.

    Of course, what these both had in common, was that they’re patient-led. Callow lives with ME, while the Unite to Fight organisers also live with it, or long Covid.

    Severe ME Day: no more ‘awareness’ – action!

    Overall, if the main ME charities half-arsed posts are anything to go by, it’ll be more ‘awareness-ing’ away the time until the next Severe ME Day. I hate to think how many more Maeve’s, Sophia’s, Carla’s, Millie’s, and Karen’s the NHS will fail by then. That’s not even to imagine the many more suffering in silence – who can’t or won’t seek medical help (and for good reason) – as this horrific disease eats away at their lives.

    Ultimately though, the action from those with power, resources, and a platform isn’t meeting the scale and urgency of this healthcare crisis. People have lived with severe ME for years, decades, lifetimes without help. They can’t wait another week, month, year, or longer. Change is needed now, because for some – like Maeve – there might not be a tomorrow.

    Featured image via Hannah Sharland

    By Hannah Sharland

    This post was originally published on Canary.

  • After the NHS failed Maeve, on Severe ME Day campaigners will call for an NHS protocol

    Thursday 8 August is Severe myalgic encephalomyelitis (ME/CFS) Day. And this year, grassroots ME organisations will launch a new campaign to demand vital change for people living with this devastating disease.

    Severe ME/CFS and its devastating impact

    ME is a chronic systemic neuroimmune disease which impacts around 65 million people worldwide. Similar to, and sometimes overlapping with long Covid, it affects nearly every system in the body and causes a range of symptoms that impact patients’ daily lives. These include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions, among other significantly debilitating symptoms.

    Significantly, post-exertional-malaise (PEM) is the hallmark feature of ME/CFS, which entails a disproportionate worsening of other symptoms after even minimal physical, social, or mental activities.

    Severe ME impacts approximately 25% of people living with the disease. In these cases, people living with severe ME/CFS are mostly, if not entirely permanently bed-bound. What’s more, they are sometimes unable to digest food, communicate, or process information.

    As the recent inquest into the death of 27-year-old Maeve Boothby-O’Neill has underscored, severe ME is sometimes fatal.

    Ultimately, catastrophic NHS failings led to Maeve’s death. It highlighted the urgent need for an overhaul of NHS care for people with severe ME. Enter the new BED for Severe ME campaign.

    Severe ME Day: a new campaign needs you

    Campaign group ME Foggy Dog and ME/CFS training organisation the Stripy Lighbulb CIC have launched the brand new campaign to draw attention to the disease and the dire lack of treatment available.

    Specifically, BED for Severe ME is calling on the public to participate in a letter campaign to local NHS boards. The letter concerns the lack of a dedicated NHS protocol for treating patients with severe ME.

    That is, while there’s an updated guideline from the National Institute of Health and Care Excellence (NICE), there’s still no protocol to guide its implementation across the health service.

    Without this to standardise treatment, NHS hospitals continue to neglect severe ME patients in their care. The result has been hospitals abusing women like 18-year-old Millie McAinsh and 23-year-old Carla Naoum.

    Founder of both organisations and long-term ME/CFS campaigner and patient Sally Callow is setting this in motion on the ten-year anniversary of her advocacy work for the community. She said:

    For someone with Severe ME, bed is their whole world, because they often need to spend most, if not all, of their time lying down. Bed is often their main place for rest, comfort, and even basic activities like eating, bathing, and ‘socialising’ online or with friends and family (if stimulation tolerated). Bed can become a sanctuary. Essentially, bed becomes more than just a piece of furniture—it’s a vital part of their daily life and health management. That’s why, this year, we’re launching the first annual ‘BED for Severe ME’ campaign to coincide with Severe ME day, and raise vital funds and awareness for people living with this heartbreaking and devastating disease.

    Crucially, we’re calling on the general public to back our call for an NHS protocol for Severe ME. This is sorely needed, since there are no effective treatments or cures for this complex disease. Those with very severe/severe ME face significant deterioration as a direct result of inadequate, inappropriate, and often harmful ‘care’ in NHS hospitals when they are admitted as inpatients. Many people at this end of the spectrum are terrified to go anywhere near a hospital setting and refuse to access healthcare services as they know how badly their ME will be impacted by all this.

    In February, Callow demanded the protocol in an open letter to key government and shadow cabinet ministers across England, Scotland, and Wales. Nearly 5,000 people have signed it since its launch. You can add your name to this here.

    Now, to ramp this up, she’s calling on members of the public to contact their local care boards about this too. Callow has put together a template letter for people to sign and send. You can find this here.

    Lack of funding for biomedical research

    Alongside the NHS local care board letter, Callow is calling on workplaces to host a ‘wear your PJs to work’ fundraising day in aid of the campaign’s launch.

    Additionally, BED for Severe ME is also asking people living with ME to come together on X if they can. To get involved, people can post a selfie of themselves in their favourite pyjamas from bed, to spread the word.

    The BED for Severe ME campaign will split funds raised between patient charity Smile For ME, and CureME. Smile for ME is a UK charity that sends personalised presents to patients and carers.

    Meanwhile, CureME is a leading biomedical ME research team based at the London School of Hygiene & Tropical Medicine.

    Crucially, Callow explained that:

    Funding for biomedical research has paled beside other comparable diseases. This is despite the fact that studies have shown that the quality of life for those living with Severe ME is worse than for patients with cancer, heart disease, and many other serious conditions. As we party together in our PJs today, from work or from bed, we’re demanding the government and research institutions finally properly fund biomedical research.

    In an article she previously wrote for the Canary, Callow poignantly articulated the importance of her continuing advocacy:

    My campaigning continues, so that when I reach that next milestone, the government, the NHS, and clinicians will take ME seriously and treat it equitably at long last.

    On the 8 August, her BED for Severe ME campaign is urging you to join her. The NHS’s abysmal care and abuse of severe ME patients continues. This has to change – and it has to change fast.

    Feature image via Sally Callow/ME Foggy Dog

    By Hannah Sharland

    This post was originally published on Canary.

  • DWP wrongly accused PIP claimant of £28,000 fraud – then backtracked

    The Department for Work and Pensions (DWP) has wrongly stripped a disabled woman of her vital Personal Independence Payment (PIP). In a shameful example of the department’s callous and overzealous fraud-busting, the DWP tried to squeeze £28,000 in benefit ‘overpayments’ from her.

    It has since apologised for and corrected the error – but only after the Big Issue caught it red-handed.

    Only ever one DWP PIP error away from losing it

    46 year-old Michelle Burns contacted the Big Issue after the DWP unceremoniously stopped her PIP in July 2024. As the outlet reported:

    A disabled woman was left in “disbelief” after her benefits were stopped and she was mistakenly accused of owing £28,000 in overpayments to the Department for Work and Pensions (DWP).

    In July, Michelle Burns was told she should never have been granted personal independence payment (PIP), six years after she was awarded it.

    Her PIP was stopped and the DWP said she would have to return all the money.

    Notably, according to the DWP, Burns was ineligible for the standard rate of PIP it had awarded her in 2018. Supposedly, she had been so from the start.

    It did so after putting Burns with the help of her disabled husband James Jolley, who also claims DWP PIP, through a telephone reassessment in May. As the Big Issue detailed:

    Her first reassessment was this year and the DWP asked for it to be over a video call, which disappointed the couple who would have preferred it to be face-to-face.

    Jolley is able to support her with the assessments, but he struggles to set up video calls because of his visual impairment – instead, it was carried out over the telephone.

    Still, the assessment seemed to be “fine” and the subsequent report appeared accurate. But in May, the couple received a phone call from the DWP claiming that further evidence was needed.

    Burns sent this and received her PIP as normal in June – but then in July the money was not in their bank account.

    At this point, the DWP informed her she owed it tens of thousands in overpayments. Following weeks of anxiety for Burns and Jolley, the Big Issue intervened:

    After the Big Issue contacted the DWP, they admitted that a mistake had been made in the accusation and apologised to Burns. She has had her PIP reinstated and the benefit overpayment scrapped.

    Of course, Burns isn’t the first the DWP’s own mistakes have screwed over. In fact, the department stopped the Canary’s Rachel Charlton-Dailey PIP only recently after its error. When she wrote about it on X, dozens more described a litany of similar DWP PIP failures. All ultimately resulted in the demonic department stopping people’s PIP benefit, which helps them live their daily lives.

    Disastrous, callous plans and errors

    Burns’ experience at the hands of the DWP comes as Labour mull over the responses from the infamous PIP consultation that closed in July.

    As the Canary has previously reported, the then-Tory government put forward a sweep of impractical, and cruel new restrictive proposals for the disability benefit. This included Sunak’s notorious voucher scheme, and raft of other unworkable ideas. One such plan was the possibility of introducing receipts for people to claim their money back from the DWP. As the Canary’s Charlton-Dailey has pointed out though:

    This is even more absurd because it almost insinuates that the DWP runs effectively enough as it is, never mind when swamped with millions of expenses requests a month.

    Now, the debacle over Burn’s DWP PIP once again shows how ill-equipped it would be for this too. In fact, as Big Issue underscored, the department itself makes millions of pounds worth in errors every year. In these instances, the DWP forces claimants to “pick up the tab” in deductions from their benefits.

    Of course, Burn’s case too drives home how a department rife in errors that put chronically ill and disabled people in distress and at risk is simply not fit for purpose overall. The DWP might have taken responsibility for its mistake in Burn’s benefits, but thousands of others likely go under the radar. That is, without the Big Issue‘s intervention, would it have owned up to its error?

    Just at the application stage alone, the DWP makes routine rejections. The majority of these get overturned at appeal with no additional evidence. Specifically, at least seven in ten DWP PIP decisions are wrong from the get-go, as appeals have repeatedly proven. It shows the shocking scale of the DWP’s failures in this one element of its disability benefit system.

    Crucially though, Burn’s DWP PIP nightmare illustrated something vital. That the whole grueling process is violent at every step. Ultimately the DWP welfare system revolves around detecting so-called fraud first, provide a social safety net after. A system like that can never redress the inequitable society in which it sits, because in both cases, they disable people by design.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Disabled people march on Downing Street to demand accessible housing

    This week disabled campaigners and allies marched on parliament to demand the new government pledge to build new accessible housing.

    ‘No more dither! No more delay!’

    The protest, organised by Inclusion London and attended by many disability rights groups and campaigners, started in Parliament Square at 12pm on Monday 29 July and featured speakers with lived experience of inaccessible housing:

    A group of disability rights campaigners stood protesting at parliament square

    people holding banners outside whitehall that read "no more dither no more delay accessible homes today! and "what do we want? accessibly homes!"

    There are currently 104,000 disabled people on council waiting lists for accessible and adaptable homes. At the current rate that new accessible houses are being built or become available, it could take a wheelchair user 47 years to get a house that suits their needs.

    400,000 wheelchair users are currently living in unsuitable homes and it’s estimated that fewer than one in 10 homes are accessible to wheelchair users.

    Not only are many current houses inaccessible and difficult to adapt due to their age, but new homes still aren’t being built to an accessible standard. Many developers are locking disabled people out of new houses by refusing to build homes to even a basic accessible and adaptable level.

    Not only are Inclusion London and the other campaigners demanding more accessible housing, but they are also highlighting that it must be affordable – as many disabled people can’t afford to own their own home or pay sky-high rents.

    Accessible housing: a shameful lack of action

    Laura Vicinanza from Inclusion London told protestors:

    Housing is the cornerstone of independent living. Yet, hundreds of thousands of Disabled in this country are living in homes that are inaccessible, unsafe and unaffordable. This is unacceptable.

    Chair of Inclusion London Adam Gabsi spoke about how much his adapted house meant to him:

    My accessible home improves my quality of life. My accessible home gives me peace of mind. My accessible home gives me the freedom that many don’t have.

    He continued:

    All new build homes should be safe, affordable and accessible. We would like the new Labour government to tackle this lack of equality.

    Disability campaigner Osayuki Igbinoba spoke about her struggles of living in an inaccessible home:

    If I’m using my wheelchair, I can’t access the sink in my kitchen or cook independently. The passages are too narrow for me to push myself in my wheelchair freely. This is not just my story, but a reality faced by many.

    She said

    As disabled people, we demand change and justice. Every disabled person has the right to live independently in a home that is suitable for them.

    Failing disabled domestic abuse survivors

    The protest also shed important light on how the government’s lack of accessible housing means survivors of domestic abuse struggle to escape their abusers. Angie Airlie from Stay Safe East, a charity which supports disabled survivors of abuse, said:

    When the home is no longer a safe place, due to abuse, harassment, or crime, there is often no place for the victim to go. Victims are trapped – unable to escape from the torture of hate crime and/or abuse.

    She highlighted that disabled people escaping domestic abuse often end up in local authority temporary accommodation – but that these places are usually unsuitable for disabled people’s needs.

    She said:

    I often made the argument to the previous government that for disabled people safe accommodation, as defined by the Domestic Abuse Act is almost mythical. It is far more likely that the choice is between unsafe accommodation, or not particularly safe and this isn’t good enough.

    The Tories’ lack of action on accessible housing

    The protest was held to mark the second anniversary of the previous government’s failed pledge to raise the minimum standards for new-build homes and to ensure all new builds could be adapted to meet disabled people’s needs.

    Not only did the previous government turn its back on that pledge, but it also refused to bring in a national mandate of how many new homes had to be wheelchair accessible.

    Intent on ensuring the new government doesn’t fail disabled people in the same way, protestors aimed chants and calls at Keir Starmer and Angela Rayner, who is of course in charge of housing and the government’s promise to deliver 1.5 million new homes in the next five years.

    Among other things, protestors chanted “Angela Rayner, join our fight! Homes for all, it’s only right!”:

    people protesting on Whitehall. One of them has a banner that reads "Angela Rayner! Join our fight" Homes 4 All it's only right" accessible housing protest

    However in her speech to the Commons the next day, Rayner didn’t mention disabled people or accessible housing once.

    Will Labour act on the accessible housing crisis?

    The event culminated in protesters hand delivering a letter signed by more than 40 DPO’s and allies to Number 10 demanding the prime minister and deputy prime minister commit to “immediate and decisive action” to right the shortage of affordable accessible homes:

    a group of disabled people outside 10 Downing Street

    Inclusion London and DPO’s demand that the new government:

    • Make the M4(2) ‘accessible and adaptable’ standard the minimum requirement for all new build homes, as the previous Government committed to on 29th July 2022.
    • Set a minimum target of 10% of new build homes to meet the M4(3) wheelchair user standard.
    • Ensure that the majority of accessible homes are built in the social rented sector, as more Disabled people need these kind of homes.

    Featured image and additional images via Inclusion London

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • When Does Concern About Presidential Fitness Become Media Ableism?

     

    Election Focus 2024The Economist published a cover story on July 6 with the stark image of a walker, a mobility device typically used by disabled people, with the United States presidential seal on it. “No Way to Run a Country,” the headline stated. Disabled people responded angrily on social media at the implication that mobility aids are disqualifying for office, mentioning former President Franklin Roosevelt, Texas Gov. Greg Abbott and Sen. Tammy Duckworth, all wheelchair users.

    Similar visual messages previously appeared on a New Yorker cover (10/2/23) and in a Roll Call magazine political cartoon (9/6/23), both from the fall of 2023. The New Yorker cover showed President Joe Biden, former President Donald Trump, Rep. Nancy Pelosi and Sen. Mitch McConnell using walkers while competing in an athletic race. The joke was that it would be absurd for such elderly people to compete in a race, but the implication was that anyone similarly disabled might not be fit to serve in political office. None of these leaders use walkers in real life.

    Economist: No Way to Run a Country

    Economist (7/6/24)

    The Roll Call cartoon showed the US Capitol transformed into the “Senate Assisted Legislating Facility,” with a stairlift and elderly people with walkers. Disability advocates often write about how the media and others should avoid using disabilities and medical conditions as metaphors, as it’s usually done to negatively stigmatize them.

    The Economist cover appeared during a period of intense media conversation over presidential fitness, which ramped up just after the last presidential debate on June 27, and continued until Biden withdrew from his campaign for re-election on July 21. With Biden and Trump both older than any other presidential candidates in history—and both showing many common signs of age—media have been discussing their capabilities for years.

    Ability and age shouldn’t be off the table as media topics during elections, but there are ways to have these conversations without promoting harm. By not interrogating “fitness for office” as a concept, the media has contributed to a culture in which two elderly presidential candidates constantly bragged about their prowess, culminating in the surreal moment of their competitive discussion of golfing abilities during the debate.

    Disability organizations have created style guides for non-ableist journalism in general. In terms of covering political campaigns, some common pitfalls to avoid include: stating or implying that all disabilities or conditions are inherent liabilities, even cognitive disabilities; diagnosing candidates without evidence; using illness or disability as a metaphor; conflating age with ability; conflating physical and cognitive health; using stigmatizing language to describe incapacities; and highlighting issues with ability or health without explaining why they are concerning.

    ‘Agony to watch’

    New Yorker cover featuring politicians using walkers

    New Yorker (10/2/23)

    Biden’s struggles with articulating and completing his thoughts during the last debate prompted a flurry of news stories, including reporting on his tendency to forget people and events (e.g., Wall Street Journal, 6/4/24; New York Times, 7/2/24). Some of the same outlets that had previously defended him against claims of being cognitively impaired (New York, 7/31/23) were suddenly diagnosing him with possible medical conditions and doubting his ability to lead (New York, 7/7/24).

    The Hill (7/20/24) called Biden’s verbal gaffes “embarrassing,” and casually quoted insiders referring to “brain farts” with scorn. “It was agony to watch a befuddled old man struggling to recall words and facts,” the Economist wrote in an editorial (7/4/24), which accompanied the cover image of the walker and called for Biden to drop out. The piece linked to another Economist piece (6/28/24) which argued that Biden had failed to prove he was “mentally fit,” and called on him to stand down and make room for a “younger standard-bearer.”

    There are reasonable concerns about the age of candidates, including that our leadership doesn’t represent the majority of the country demographically and that elderly candidates may not live long. But the Economist made implicit assumptions about age and disability, including that a “younger standard-bearer” would likely be more “mentally fit.” According to scientists, slower communication and short-term memory loss are associated with aging, but some other cognitive abilities have been shown to strengthen.

    What’s more, Biden’s gaffes might have been “embarrassing” to him, or “agony” for him to experience, but characterizing disability or struggle from the outside as embarrassing or unpleasant to observe is a common form of ableism. It’s reasonable to report on his mistakes without editorializing and stigmatizing language.

    Neither Trump nor Biden have a record of supporting the needs of disabled people while in office, especially around the Covid-19 pandemic. Still, their disabilities or capacity issues do deserve sensitivity. By insulting memory lapses and mobility issues, even implicitly, the media insults everyone with those conditions.

    It seems some part of the media’s panic around the abilities of presidential candidates has more to do with elections than with who is running the country. Biden’s re-election chances fell into jeopardy after the debate. The Washington Post (7/22/24) recently made this clear. “Trump’s age and health under renewed scrutiny after Biden’s exit,” it reported:

    After weeks of intense focus on President Biden’s health and age that ended with his withdrawal from the campaign on Sunday, the script has flipped: Former president Donald Trump is now the oldest presidential nominee in history—and one who has been less transparent about his medical condition than his former opponent.

    The Post makes it sound as if media are passively reporting on the next inevitable story, and not actively choosing to focus its disability-related concerns around its election concerns.

    Best in show?

    Roll Call cartoon featuring a stairlift installed on the Capitol steps, with the caption, "There's been a few upgrades at the Capitol over the recess, senator."

    Roll Call (9/6/23)

    The recent Washington Post article (7/22/24) on Trump’s abilities points out that he hasn’t released his medical records since he was president, when he had “had heart disease and was obese.” It also points out his “elevated genetic risk of dementia.”

    With the intense focus on medical records and physical tests, the news media often writes about the bodies of presidential candidates as if they were competing for Best in Show, instead of for a job that primarily involves decision-making, leadership and communication—and for which disability might even be an asset in terms of compassion and understanding.

    News outlets have reported with concern on how Biden and Trump walk, despite the fact that the majority of people in their 80s deal with mobility challenges. (Biden is 81; Trump is 78.) According to the Boston Globe (3/12/24), “Joe Biden needs to explain his slow and cautious walk.” The news article does offer his physician’s explanation of neuropathy but doesn’t seem to accept it.

    The article argues that Biden’s silence about his gait was contributing to concerns that he might have an illness like dementia or Parkinson’s. The Globe seemed to take for granted that Parkinson’s would be a problem for voters and not, say, an asset. Many voters have similar conditions and might appreciate the representation. The article then mentions that Biden’s slower walking might be a sign of diminished “mental capacity,” conflating physical and cognitive issues.

    In 2020, there were similar articles about Trump showing signs of unsteadiness while walking and drinking from a glass of water, with the implication that difficulties with both might undermine his fitness for office (New York Times, 6/14/20).

    No privacy for presidents?

    Bloomberg: Presidential Candidates Shouldn't Have Health Secrets

    Bloomberg (7/3/24)

    The Americans with Disabilities Act protects disabled people from having to disclose details about their conditions. This is because stigma and bigotry are so widespread that it’s understood such details might be handled with prejudice by employers. Media outlets undermine those principles in their lust for detailed information about the medical records of presidential candidates.

    Just after the last presidential debate, Bloomberg (7/3/24) insisted in a headline that “Presidential Candidates Shouldn’t Have Health Secrets.” The article not only demanded clarity on what caused Biden’s “poor performance” in the debate, but also that candidates go through independent medical evaluations, with the full results being released to the public. Implicit in this demand is that pre-existing conditions would be liabilities. Otherwise, why would the public need to know?

    “Americans are naturally curious about the health of their president, and any sign of illness or frailty gets subjected to intense public scrutiny,” a follow-up Bloomberg article (7/10/24) insisted. Are Americans curious, or are the media? The article pointed out that the US obsession with presidential health is unusual; in most countries, leaders don’t release their medical records. Still, the article went into intense detail about everything known and speculated about in terms of Biden and Trump’s health, body weight, medications and the like.

    The media’s focus on the physical imperfections of presidential candidates is biased not only towards abled people, but towards white men. Women and people of color are more likely to have pre-existing medical conditions, and more likely to face stigma as a result of them. The Washington Post (7/22/24) already noted that Kamala Harris hasn’t released her medical records, or responded to questions about it.

    During the 2016 campaign for presidency, Democratic candidate Hillary Clinton fainted. Her doctor said she had pneumonia and was overheated. Not surprisingly, right-wing media used it as a chance to portray her as weak and unfit, but even some liberal outlets (CNN, 9/12/16), decided this was a significant incident worthy of endless commentary, speculation and demands for investigations. Fainting is something many people, especially women, experience routinely, as part of illness, heat, exhaustion or just standing for too long. The media worked to denormalize it.

    Obsession with candidate bodies

    NBC: Biden suggests to allies he might limit evening events to get more sleep

    NBC (7/4/24)

    Overall, media seem to have a unique preoccupation with the bodies of presidential candidates–more than, say, members of Congress, Supreme Court justices or governors. There is a mythology around presidents, which Trump himself played into by recently referring to himself as a “fine and brilliant young man,” along with celebrating his survival of a recent assassination attempt.

    Biden, who has historically portrayed himself as strong, and even claimed to overcome his stutter, finally started to let go of this mythology just before he dropped out of the race. He acknowledged age, exhaustion and slower speech. He joked about being fine besides his “brain.” And he mentioned that he might need more sleep. He was exhibiting another kind of strength through honesty, though it might have been strategic. It turned out to not be the most politically effective approach: Some media outlets highlighted him needing more sleep as headline-worthy and a red flag (NBC, 7/4/24; New York Times, 7/4/24).

    The challenges Biden and Trump face in walking and speaking are evident to the public. Questions about underlying health issues are fair, but the implication of all of this “Best in Show” coverage is that people with significant disabilities, or even just a need for regular sleep, might face a hostile, intrusive media if they ran for president. And this discourse trickles down to how people feel permitted to speak about ordinary disabled civilians.

    The presidency isn’t a sporting event. If media outlets are going to express concern about a candidate’s physical abilities, they should clarify what assumptions are guiding their concerns. As it stands, most of these articles and images just seem concerned with any signs of disability, which they implicitly associate with not being fit to serve.

    This post was originally published on FAIR.

  • A major ME charity shared an article gaslighting Maeve after her death

    It’s the second week of an inquest into the death of Maeve Boothby O’Neill. In 2021, the 27-year-old died of myalgic encephalomyelitis (ME/CFS). However, it wasn’t the devastating disease alone that killed her – Maeve died as a result of a series of unconscionable failures by the NHS professionals charged with her care.

    During the first week, Maeve’s words – penned not long before her death – were read out to the courtroom. Among her fiercely intelligent, powerful, and enormously important musings on the abysmal state of ME care, Maeve wrote:

    How frightening to discover that there are no doctors who can help you, that they do not even know what is wrong with you, and that in looking for effective alternatives you will be wandering in a wilderness of quacks and blogs.

    Three years on from her death, one post on X has proved how heartbreakingly and painfully true Maeve’s words were – and still are. Because in the midst of the ongoing inquest, the corporate media has spun, woven, and twisted the facts to fit a particular narrative. Largely, this is one where NHS clinicians aren’t culpable – and biopsychosocial beliefs not to blame – for the catastrophic failings that ultimately led to her death.

    A singular article from iNews has summed it up, when – Maeve’s inquest ongoing – it proselytised psychiatric and dubious alternative treatments. And what made it infinitely worse? One of the UK’s biggest ME charities shared it (seemingly) without a second thought.

    Maeve inquest: another gaslighting article on ME/CFS

    On the face of it, the iNews article explored former severe ME/CFS patient Lucy Rowett’s battle with the devastating chronic illness and a dire healthcare system.

    Predictably, there were many parallels with Maeve’s story, which it drew. In this way, the article appeared to be speaking to the systemic stigma and dogma that pervades the entire healthcare system for ME. Yet, this wasn’t actually the underlying thrust of piece, or Rowett’s message. Instead, it promoted junk science, psychologising treatments, and alternative therapies.

    There’s a long, torrid history of snake-oil sales people preying on people living with ME. A prominent recent example was the Dragon’s Den ‘ear seeds’ debacle. In this case, Rowett was opining her successes with reiki – a pseudoscientific ‘energy’ therapy.

    Of course, it didn’t stop there. In one notable passage, it described how Rowett had gone to an inpatient unit at Queen’s Hospital. There, doctors put her on a “structured programme”. She told iNews what this involved, stating how:

    One week I’d start by trying to sit slightly up for 10 minutes, the next week I’d sit up a bit more and for a bit longer. We did the same with walking to the end of the bed”. That helped gradually build back her ability to sit up, chew and walk.

    In short, this was graded exercise therapy (GET) by any other name. This is the treatment at the centre of immense harm to people living with ME. Reading this was jarring next to Maeve’s own words I’d heard during Friday’s proceedings, and the experiences of myself and many others I know living with ME.

    Corporate media STILL promoting GET

    Maeve had spoken to her own encounter with GET and cognitive behavioural therapy (CBT) – another treatment wrapped up in the history of the psychologisation of the disease. By contrast to Rowett, she’d written that:

    I attempted to follow the workbook they gave me, find my high energy activity baseline and increase it by 20 per cent every fortnight, provided this didn’t bring on any symptoms. It didn’t work.

    Instead, my baseline shrank. I rarely had the energy for telephone CBT [cognitive behavioral therapy] with an OT [occupational therapist], and it was never helpful. Physical stamina was the wrong paradigm, nor was the issue with my thoughts or feelings of behaviour. Since then my health has only deteriorated. I am now 26.

    After the ceaseless, unwavering efforts of ME/CFS campaigners, the National Institute for Health and Care Excellence (NICE) updated its clinical guidelines, dropping GET as a treatment for ME. Maeve herself wrote on the guidelines too:

    Persisting with the GET/CBT approach on the grounds that it is evidence base[d] when that evidence base is fundamentally flawed, will do nothing to improve the situation of severely affected patients, any of whose severity of disease has been increased by this treatment.

    Having come so far to recognise the needs of patients, particularly the severely ill, I profoundly hope that NICE [the National Institute for Health and Care Excellence] will not bactrack at this late stage.

    But she did not live to see it – NICE published these just weeks after Maeve’s death in October 2021. And three years on, here again was a corporate media outlet laundering this dangerous treatment, in the very midst of Maeve’s inquest.

    However, this wasn’t even the worst of it.

    As Severe ME Day approaches

    Maeve’s inquest will conclude just days before Severe ME Day – 8 August – Sophia Mirza’s birthday. Sophia was the first person in the UK to have ME/CFS recorded as her cause of death. She died in 2005, after a litany of painfully similar failures and abuse by healthcare professionals. Since 2013, the community has marked this as a day of remembrance for all those who’ve died to ME. And of course, there have been far, far too many.

    For Severe ME Day in 2020, the ME Association posted an extract from Sophia’s Story, written by her mother Críona Wilson. In this, she expressed how Sophia’s abusive GP tried to coerce her to attend a supposed specialist neurological clinic. She wrote that:

    In 2001, Dr. Firth approached Professor Findley at Oldchurch Hospital in Romford, telling me, for legal protection of the G.P. and the surgery. Sophia asked me to research the clinic, which cost thousands of pounds. They told me, when I pressed them for long-term results, that patients usually revert to the point from whence they started.

    I spoke to a couple of ex-patients who were afraid to have their names used; they said that this clinic was run on the lines of mental health and used Graded Exercise, although it claimed to be a neurological clinic. They also said that when patients did not get better that they were given a different diagnosis before being sent home. Sophia elected not to go to the clinic.

    And so it is with a cruel, contemptuous irony that during Maeve’s inquest – almost two decades on from Sophia’s death – a corporate news outlet was extolling none other than Dr Leslie Findley, and his long-closed ME clinic.

    ME Association provides veneer for trash article

    It was in this context that the ME Association posted the article on its X:

    The piece had a comment from the ME Association’s honorary medical adviser Dr Charles Shepherd. It’s presumably why the charity’s social media handle shared the article in the first place. However, if anything, the quote actually makes this all that much worse.

    By providing a comment, the ME Association loaned legitimacy to the whole piece. And wittingly aware of the article’s GET and alternative therapy bent or not, the damage is done.

    Plenty from the ME/CFS community on X have voiced their horror at this. However, it’s also not hugely surprising either. For one, I’ve previously explored the connections between the ME Association and a notorious organisation at the heart of the psychiatric lobby.

    The big ME charities have at best, stood idly by as the NHS kill many more Maeve’s.

    In the last year alone, the Canary has highlighted three such women NHS services have been abusing. They are still doing this right now to 23-year-old Carla Naoum in West Middlesex hospital.

    At worst, the ME charities have been actively complicit in propping up arrogant professionals trivialising ME as part-psychosomatic.

    The ME Association’s comment in and share of this iNews article is another case and point of that.

    Maeve should still be here

    The concluding line in the iNews article has stayed with me in an altogether different way to Maeve’s prosaic words. It was a quote from Rowett, which said:

    Recovery is possible. I know it is. Maeve didn’t need to die.

    Of course, she was right in this, Maeve didn’t need to – or rather, shouldn’t have – died. But this isn’t as Rowett and iNews implied as a result of missed opportunities for alternative therapies. In fact, it’s precisely these psychiatric, opportunistic, as Maeve herself put it, “quacks” – and the media that shills for them – who were responsible for her death.

    After years of gaslighting people living with ME/CFS, I didn’t think the corporate media could stoop any lower. Gaslighting a young woman after her death? How wrong I was.

    Maeve was a writer, the same age as me, from the county just over from mine. In 2021, I was going through the second year of a Covid-induced ME relapse. I was never severe, but I was mostly house and bedbound, feeling helpless and hopeless as so many living with this awful chronic illness do.

    In the grip of her severe ME, Maeve wrote so poignantly, profoundly about the tragic, woeful state of care for people with ME. Somehow, her lyrical prose still managed not to pull any punches. She articulated so eloquently what I’m now struggling to put into words and communicate to you.

    By the end of 2021, Maeve was gone, the NHS had killed her. In December 2021, life in tatters, I reached out to Steve Topple here at the Canary.

    In her writings, Maeve had expressed how:

    I had every potential to be an asset to humanity, and hoped and intended to advance the cause of human flourishing

    I didn’t know if I had that potential, and I still don’t. But I did know that if I got the chance, I wanted to turn my pen to do the same. And I was lucky. In the months that followed, my ME did improve. Then, in March 2022, Steve invited me onto the Canary’s journalism training scheme.

    It’s why I’m where I am now, writing this: why – if I’m honest with myself – I think I’m even here now at all. Maeve should be here now too, writing her truth to power, and I so badly wish she were.

    The ME Association and iNews circulating this sham biopsychosocial ‘science’ are an affront to her memory. Never more so than the very fortnight we’re seeing just how a healthcare system with this firmly entrenched belief utterly failed this young, brilliant soul, who should have had so much life yet to live.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Labour DWP ministers leave chronically ill and disabled people in the dark over controversial PIP reform proposals

    Labour Department for Work and Pensions (DWP) ministers are keeping hush hush over the new government’s plans for the Tories controversial Personal Independence Payment (PIP) reforms.

    DWP PIP consultation: Labour’s continued silence

    On Monday 22 July, the Tories’ notorious DWP PIP consultation closed. As the Canary previously reported:

    Under the previous Conservative Party government, the DWP launched plans to overhaul the benefits system. When it came to PIP, the then Tory-led department put forward proposals to cut the number of claimants and implement new supposed cost-saving alternatives.

    Significantly, this included Sunak’s notorious plans to replace the disability benefit with a voucher scheme.

    To date, the new Labour government has been tight-lipped on its agenda for PIP. Naturally, people in the chronically ill and disabled community have been concerned by this.

    This is not least because Labour’s DWP boss Liz Kendall has already begun scapegoating sick and disabled people. In particular, she has made getting them into employment a key plank of the government’s ‘Back to Work’ agenda. And there are alarming signs that this will mean coercing people who are too sick into work.

    Given all this, chronically ill and disabled campaigners and organisations have repeatedly called for the government to scrap the DWP PIP consultation – and the proposals along with it. However, Starmer and co have kept quiet – leaving people to wonder if the new plan might very well be the old plan – that is, the Tory’s dangerous new reforms.

    In fact, up until now, the only public information about Labour’s plans for the DWP PIP consultation had come from so-called “Labour insiders” speaking to the Mirror.

    Now, Labour DWP ministers have finally piped up – but they’re leaving people with no clearer answers.

    Tight-lipped on PIP in parliament

    First up, DWP Lords spokesperson baroness Maeve Sherlock dodged scrutiny over PIP in the House of Lords.

    Liberal Democrat life peer baroness Celia Thomas tabled a question on 18 July. She quizzed the government over its plans for changing DWP PIP assessment process. Sherlock responded on the 25 July.

    Of course, Sherlock gave a non-committal response, stating the same spiel as the insider leak:

    We will be engaging with the responses people have made to the previous government’s consultation on Personal Independence Payment, which closed on Monday 22 July.

    We want to thank the many people who invested their time in responding.

    We will be considering our own approach to social security in due course.

    Then, it was much the same semantic gymnastics in the House of Commons. Leftwing Labour MP Clive Lewis put forward a more specific question on the government’s DWP PIP plans. His written question queried:

    whether her Department will replace cash payments for the Personal Independence Payment.

    Needless to say, the answer kicked the can down the road once again.

    DWP PIP: no answers anytime soon

    Now however, it’s unlikely we’ll be getting greater clarity on this any time soon. This is because, as Benefits and Work have noted, from the 30 July (today), it’s the start of parliamentary summer recess.

    The outlet also pointed out that party conference season will run from 13 September to 6 October. This means that there’ll be less than two weeks between the end of parliamentary recess and the start of the autumn conference season, when the House of Commons once again goes into recess.

    Given the understandable distress the Tory proposals have been causing, Labour leaving chronically ill and disabled people in the dark on the DWP PIP plans is not good enough.

    Feature image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Sonya Massey’s Killing Shows the Danger Police Pose to Black Disabled People

    Sonya Massey’s last words before a Sangamon County Sheriff’s Office deputy shot and killed her in her Springfield, Illinois, home earlier this month were, “I’m sorry.” The 36-minute body camera footage released Monday depicting her July 6 killing showed her interaction with the officers she called for help began calmly enough. At times, it even appeared to veer into light-hearted…

    Source

    This post was originally published on Latest – Truthout.

  • Voting as a Disabled Person | Disability Justice Activist Dara Baldwin Talks ADA & “To Be A Problem”


    This content originally appeared on Laura Flanders & Friends and was authored by Laura Flanders & Friends.

    This post was originally published on Radio Free.

  • Labour’s housing policy has already forgotten about disabled people

    So far, the policy announcements made by Labour regarding housing and in their Renters Reform Bill have mentioned affordability. However, accessibility and the plight of chronically ill and disabled people of working-age stuck, in unsuitable homes, has been overlooked.

    Disabled people: accessible housing still being overlooked

    Why this is so important is because this housing and evictions crisis has brought turbulence, stress, and harm to people with serious impairments and chronic illnesses.

    Many have had to ‘settle’ for unsuitable, cramped, and unsafe housing. In these properties, simply trying to function day-to-day takes a huge toll whether that be on their physical and/or their mental health. 

    Disabled People Against Cuts (DPAC) say:

    Many older and disabled people live in totally unsuitable and non-accessible properties. This is particularly the case for wheelchair users who may need a larger property to be able to move around in.

    But these larger properties are either too expensive or not available. This can make it very difficult in getting out hospital if an adaptable house isn’t available. Some people can end up staying in hospital for months and even longer, even though they are ‘fit to leave’.

    A recent BBC story about Matthew Sharp still in hospital after ten months is unfortunately not that unusual.  

    Kenny: a case in point for Labour housing policy

    This was the case for Kenny Hughes:

    He hoped that after sustaining spinal cord injuries he’d be able to go home from hospital, and the adaptations needed for him to live at home would be carried out. But that wasn’t the case:

    My house just wasn’t fit for purpose, so I was told I’d be getting discharged to a care home or a shelter. I panicked and sold the house to avoid that happening.

    Just two days out from Christmas, I ended up renting the first place I viewed. It was ground floor, but I need assistance opening doors because they’re spring loaded and there’s not much room to move around.

     Living in this property also means basic tasks such as keeping clean become a dangerous, monumental battle. Kenny, a father from Rochdale, says:

    Maybe once every three weeks I’ll have a shower. Otherwise, I clean myself using wipes. I can’t afford to pay for carers, so I just have one every now and again.

    Kenny is hoping to get back to work after his injury but the problems with his rental home are never far away:

    I really want to work and am looking at jobs in kitchen sales, but I’m concerned about visiting clients and looking unkempt or worse, smelling because I can’t wash myself. I can’t even reach the sink to wash my hair.

    The upheaval you go through following a spinal cord injury and then, coming back to a strange place that isn’t home is devastating when you’ve lost so much already.

    Accessibility to accessible properties

    Space is a key issue, often overlooked. The cost of larger properties means many people are instead in small housing units. The sheer amount of (often expensive) equipment and medical supplies can quickly fill up an already compact home, making it cramped and at times unsafe. 

    What is needed are more truly accessible homes and a less myopic view of the housing market on ‘homeowners’ so that along with homes to buy, developers are building many more accessible and truly affordable homes to rent, in both the private and social housing sectors.

    But if you’re looking privately or on a council website, you’ll find accessible properties are often cordoned-off for those over 55 or 60 years of age.

    This is an issue Spinal Injuries Association public affairs coordinator Glyn Hayes faced after he sustained SCI and couldn’t go home. He eventually was successful in challenging the age restrictions:

    However, the only options were in age 60+ assisted living estates, which wasn’t ideal for me in my mid-30s. Being a former Councillor, I am aware that my own experience is not unique but rather a daily reality for numerous disabled individuals throughout the United Kingdom

    The Spinal Injuries Association (SIA) say:

    Regardless of their age a safe home adapted to meet your needs is the fundamental right of every person with spinal cord injury in the UK but all too often they end up in totally unsuitable accommodation.

    Urgent reform is needed to increase social housing that is integrated into new housing developments in the UK, in particular homes which can be adapted to meet the needs of disabled people.

    Landlords, adaptations, and renting

    Getting homes adapted can be a nightmare for disabled tenants.

    Grants can be a complicated process and can take years to complete, leaving those waiting for adaptations in desperate situations.

    For those in private rentals this can be even worse. Landlords, especially unscrupulous landlords, seem unwilling to make changes to properties and some are even unwilling to let a property to someone on disability benefits.

    To compound these problems further has been the deeply damaging Section 21 ‘no-fault eviction’ scandal. That has seen many disabled people torn from stable homes and plunged into a turbulent housing market. I know, because in 2021 I was one of them.

    Here, with a clock ticking, they’ve been faced with the near-impossible task of finding a truly affordable and accessible home in the social housing or private rental sector.

    But with sky-high block rents in the private sector, millions waiting for social housing and a record number who are homeless and in temporary accommodation, this is often a highly stressful but ultimately fruitless search.

    Kelly: from a section 21 to unsuitable housing

    This has forced the hand of those disabled people who’ve had to accept unsuitable homes through fear of being homeless.

    This is what happened to Kayleigh from Guildford, a young disabled woman who was evicted from her home under section 21.

    She initially felt she had no choice to accept a council property on the 2nd floor. She said:

    it had heavy fire doors and a wheelchair lift that required a standing person to operate. Every time it broke, I was stuck on the 2nd floor and had to fight for my right to leave.

    Like Kenny and Glyn, Kayleigh challenged the over 55’s council rule and eventually got a property, but due to space and other issues, this still wasn’t OK. Kayleigh said:

    I don’t have enough space to use my wheelchair inside and had to have my entire bathroom ripped out because of the contractor scandal which left me without a shower for a week.

    Reflecting on what she had to endure, Kayleigh said:

    It’s near impossible to find a wheelchair accessible home and often landlords don’t want to make adaptions for accessibility. All the council properties that have minimal wheelchair access are earmarked for over 55s which is infuriating for those of us born disabled.

    Labour housing policy must improve

    Tom Darling, campaign manager at the Renters’ Reform Coalition, said:

    England’s renting crisis is out of control, with soaring rents and unprecedented levels of homelessness – insecurity and disrepair are a grim part of everyday life for millions.

    As is so often the case with a social crisis, the impact falls that much harder on renters with disabilities, many of whom are forced to accept unsafe, inaccessible or cramped homes, as it is harder for them to find a suitable place to

    Due to the difficulty of finding accessible homes, we know people with disabilities are particularly affected by no fault evictions and are also unfairly targeted by discriminatory landlord practices like refusing to let to people claiming benefits.

    The government’s forthcoming Renters’ Rights Bill must provide concrete solutions to these problems and tackle the power imbalance between landlords and tenants which lies at the heart of the renting crisis. Disabled people ought to be able to make reasonable requests of their landlords without fear of eviction.

    If the aim for this government is to get more disabled people into work and to increase productivity and growth, then the government must widen their focus and consider the plight and mental toll of those who are currently in accommodation or temporary accommodation that doesn’t meet their needs.

    Featured image supplied

    By Ruth Hunt

    This post was originally published on Canary.

  • DWP makes callers wait 753 years says report – but that’s the good news

    In just one year, the Department for Work and Pensions (DWP) made members of the public wait a collective 753 years for the department to answer calls to its key service – including for PIP. Across over 40 million calls in 2023, the DWP forced benefit claimants and prospective applicants to wait an average of over 15 minutes, but for many the wait was much longer.

    This was the headline take-away picked up by the corporate press from a new report by the UK’s public spending watchdog. However, the report exposed more about the abysmal state of the DWP than outlets cared to report.

    Crucially, its treatment of chronically ill and disabled people was once again shown to be appallingly dire.

    DWP: 753 years on the line

    On 23 July, the National Audit Office (NAO) published a report reviewing the “quality of” the DWP’s customer service.

    Largely, the report found that the DWP had “fallen short” in a number of critical areas, concluding that:

    It is generally not meeting its performance benchmarks or standards for customer satisfaction, payment timeliness and answering calls to its in-house telephone lines.

    And notably, there was one especially stand-out figure. As Sky News reported:

    People phoning the Department for Work and Pensions (DWP) collectively spent more than 753 years waiting for calls to be answered in 2023/24, a report has found.

    The wait time applied to more than 40 million calls made – although more than six million of these were abandoned.

    Essentially then, the DWP wracked up an astounding collective wait time for people accessing its key service. A singular clarification in the report showed that the reality was actually worse still. It said that:

    It does not include any time customers spent waiting before they were assigned to a queue.

    In other words, the real total wait time could actually be much longer than this. Of course, this has real-world impacts on claimants. Significantly, the burden of the DWP’s failures on chronically ill and disabled people was plain to see.

    While the report’s analysis of this was limited, it came across to some extent through the DWP’s service satisfaction evaluation. Naturally, this was a survey the DWP conducted to measure customer satisfaction with its services. Overall, for its most recent survey in 2023, 83% of customers said they were satisfied with the service they received.

    This sounds high, but it means that nearly a fifth of people dealing with the DWP weren’t content with the service. What’s more, the number dropped when applied to people claiming disability benefits. Personal Independence Payment (PIP) claimants said they were satisfied with the DWP’s customer service just 77% of the time. Effectively then, almost a quarter of PIP claimants it surveyed weren’t happy with the service.

    And the disproportionate impact of the DWP’s failures on chronically ill and disabled claimants was a reoccurring theme across other statistics the report reviewed.

    Barely half of DWP PIP claims processed on time

    Perhaps most notably, the NAO report revealed how in 2023, the DWP had processed just barely over half of PIP claims on time. Comparatively, the department had managed to complete State Pension claims on time in 96% of cases.

    The DWP has varying expected timeframes for processing different benefits. For the State Pension, this is ten working days. By contrast, the DWP aims to process PIP claims within 75 working days.

    Essentially then, the DWP had 7.5 times the time in which to process these than the State Pension, but was managing to do this for only just over half the cases.

    The DWP justifies these lengthier timeframes as a result of the increased “complexity” of PIP, compared to the State Pension. Specifically, the report stated how the DWP had set the 75 working day target to account for:

    the time taken to gather the detailed evidence needed to assess a claim.

    However, this mainly serves to reinforce how onerous the process is for chronically ill and disabled claimants. And previous research has indeed demonstrated this as well. For example, a 2022 parliamentary question revealed how PIP claimants overwhelmingly win their appeals based on the very same evidence they provided during their initial assessment. As Benefits and Work reported:

    So, in 91% of cases the claimant won without any new evidence being provided.

    And in just a tiny 1% of cases was it new written evidence, for example a medical report, that swung the outcome.

    Of course, this suggests that the DWP is wrongly rejecting many applicants through its cumbersome process.

    Underpaying claimants on disability benefits

    What’s more, the report’s findings also backed up the fact it’s wholly inadequate for chronically ill and disabled claimants. Specifically, it identified how:

    Levels of unfulfilled eligibility were highest for disability benefits

    Effectively, ‘unfulfilled eligibility’ is the DWP jargon for the department paying claimants less than they were entitled to. For DWP PIP, this stood at 4%, accounting for £870m. The DWP underpaid Disability Living Allowance (DLA) claimants most, at 11.1%, or £750m less than they should have received.

    Largely, it attributed this to:

    customers failing to inform DWP that their condition has worsened or their needs have increased

    There are some obvious issues with this framing too. For one, it’s the DWP doing what the DWP does best: pushing the blame onto claimants for its own failures. Essentially, it’s writing off vastly underpaying thousands of claimants as their own doing, without looking at why it is people aren’t contacting them in the first place. This could be for many reasons, but the obvious one is that people whose health condition has worsened, might literally not be able to. This is obviously a problem for fluctuating conditions like myalgic encephalomyelitis (ME) and long Covid for instance.

    So, even if we are to accept it’s claimants’ fault for not informing the DWP, it once again primarily goes to show how inadequate and flawed the DWP PIP process is. In short, the system is the problem, not the people claiming it. Moreover, it neatly underscored the issue that the DWP always places the onus on claimants to prove their condition and constantly update them if it changes. This is instead of simply accepting people’s circumstances and providing appropriate support from the get-go.

    Leaving DWP PIP claimants without answers

    At the same time, the report also noted that the DWP in-house and outsourced telephone services had answered 85% of calls in 2023-2024. That sounds like an impressive percentage. Only, this wasn’t actually the full picture either.

    Firstly, that 15% equates to 6.5 million calls unanswered [43.2m-36.7m]. That in itself is no small number – because behind them are real people trying to get support for their DWP PIP claims. For instance, this could include a number of the people the DWP say failed to update it of their worsened health condition.

    The DWP statistics split out calls taken by its in-house service from its outsourced system. Outsourced calls performed better in 2023-2024, fielding 94% of calls. In the same period, the in-house lines hit only 76% – meaning it failed to answer nearly a quarter of calls to its service.

    In reality though, its performance was a lot worse than those figures showed, because the DWP was massaging its numbers. This is because the DWP doesn’t include ‘blocked calls’ or ‘deflected calls’ in these figures. Blocked calls are those the automated system rejects when phone line queues are ‘full’. Meanwhile, the report explained that deflected calls are typically those its phone service drops because callers are contacting towards the end of the day.

    The DWP’s in-house service illustrated the issue best. For blocked calls, this amounted to 10%, and deflected were 4%, together comprising 3.6 million calls. So when the DWP included these in its statistics, the rate of answered calls fell significantly to 66%. In other words, its in-house line was failing to answer a third of calls to the service.

    In short: the DWP’s main service is massively inaccessible for claimants.

    DWP: a toxic culture divorced from the real-world

    Overall, this was a predominantly clinical assessment of the DWP’s service performance. In particular, its focus centred round the DWP customer services’ “value for money”.

    In that sense, the report wasn’t packing any real punches. The similarly subdued Civil Service World highlighted how the assessment put many of the DWP’s failings down to:

    workforce retention difficulties and inefficient IT

    And while ill-equipped, inexperienced staff and outdated IT might play a part, this ignored a key factor. Specifically, the toxic culture at the heart of the DWP. For one, as the Canary’s Steve Topple recently reported, the majority of DWP staff have admitted that they do not carry out proper safeguarding procedures. But more than this, as Topple noted, this is little wonder within a department that is:

    systemically prejudiced, discriminative, and negligent towards claimants. It has wilfully covered up it and its staffs’ involvement in the deaths of claimants for years.

    Not to mention that the UN has repeatedly lambasted the department for its “grave” and “systematic” rights violations. Throw in the fact that the Equality and Human Rights Commission (EHRC) has launched an inquiry into the inhumane treatment of chronically ill and disabled people and you get a fairly good idea of the department’s nature.

    Ultimately, as removed from the real-world reality of all this for claimants as it was, the NAO report still proved something vital. That is, that the DWP is utterly unfit for purpose. PIP and other claimants and campaigners already know this. Now however, we have more solid evidence and context to the DWP’s disgraceful litany of failures.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • This week: legal challenge against the government from disabled people and Friends of the Earth

    A legal challenge over the UK government’s failure to protect disabled people, property and infrastructure from the foreseeable impacts of the accelerating climate crisis was heard in the High Court this week.

    The groundbreaking, two-day ‘rolled up’ hearing (23-24 July) was brought by Friends of the Earth and two people whose lives are already severely impacted by the climate crisis. Supporters and allies joined them outside the High Court:

    Disabled and other marginalised people not protected

    Disability activist Doug Paulley has a number of health conditions which are being exacerbated by searing summer temperatures, causing not just great distress and discomfort, but also putting him at increased risk of serious harm. These include an impairment that affects the nervous system (autonomic dysfunction) which has contributed to several strokes during Doug’s life, as well as diabetes and a heart condition.

    Kevin Jordan, who is also disabled, was made homeless shortly before Christmas 2023, after his house in Hemsby, Norfolk was demolished after coastal erosion fuelled by sea level rise and severe storms caused by climate change put it in acute severe danger of falling into the sea.

    Friends of the Earth and the co-claimants argue that the current National Adaptation Programme (NAP3) continues to fall short and is unlawful on the grounds that it breaches the Climate Change Act for failing to set out lawful ‘adaptation objectives’, and for failing to consider and publish an assessment of the risks to delivery of the plans and policies included.

    They will also argue that it breaches the human rights of the individual claimants, and that marginalised groups – such as older and disabled people – and those living in areas most at risk from climate change, are disproportionately affected by the impacts of the climate crisis and the government’s failure to produce a credible or lawful plan to help protect them. The government also should also have properly assessed equality impacts of its adaptation plans and did not do so.

    Third National Adaptation Programme

    Under the Climate Change Act 2008, the government of the day is required to produce and implement a National Adaptation Programme every five years, with the latest (NAP3) published in July 2023.

    The programme is required to set out the government’s climate adaptation objectives, along with its plans and policies for meeting them, to protect communities in the UK from the impacts of climate change, such as extreme heat, flooding and coastal erosion. Friends of the Earth argues the objectives were set unlawfully, in breach of the Climate Change Act and Human Rights Act requirements.

    Last week, the Climate Change Committee called on ministers to ‘strengthen’ the NAP, having previously warned [8] that the current programme “falls far short of what is required. Evidence of the UK’s inadequate response to worsening climate impacts continues to mount”.

    Worryingly, it also highlighted that “only around 40% of the short-term actions to address urgent risks identified in the last Climate Change Risk Assessment are progressed”.

    ECHR case

    In April this year, the European Court of Human Rights ruled in favour of a group of older Swiss women, who argued that the lack of action on climate change had violated their human rights.

    The ECHR case has relevance to this legal challenge – which will be heard by a UK court – not least because it also deals with deficient state action on climate and its adverse impact on health and human rights.

    Earlier this year Friends of the Earth – along with ClientEarth and Good Law Project – successfully challenged the government’s plan for meeting the UK’s emission reduction target, the Carbon Budget Delivery Programme. The High Court has ordered that a revised plan be drawn up by 2 May 2025 at the latest.

    New climate adaptation plan required

    In its recent manifesto, the new Labour government pledged to “improve resilience and preparation across central government, local authorities, local communities, and emergency services.”

    Friends of the Earth is calling on the government to commit to introducing a robust and comprehensive NAP, aligning with Climate Change Committee advice. The environmental justice organisation echoes the committee’s call [8] for urgent government action in three key areas:

    • Governance: The government must make adaptation a top priority and ensure effective cross-government collaboration to ensure all departments are engaged with adaptation and recognise the challenges climate impacts pose across multiple sectors.
    • Investment: Adaptation funding must be increased to deal with the climate challenge we face. The CCC warns “NAP3 does not tackle effectively the barriers to investment, such as low perceived urgency of adaptation, lack of clear targets and the limited understanding of adaptation actions”.
    • Monitoring: Better monitoring and data collection is crucial for responding to the impacts of climate change. Progress must be capable of being effectively tracked. Without better information people cannot assess the risks they are exposed to, and parliament cannot hold the government to account.

    Last week (Friday 19 July) Friends of the Earth published new analysis showing that millions of lives are threatened by extreme heat in England due to the UK’s lack of climate preparations.

    Climate adaptation plans putting lives at risk

    Friends of the Earth climate campaigner, Alison Dilworth, said:

    Our homes, lives and livelihoods are being put at risk by the government’s weak, and we believe unlawful, climate adaptation plans.

    The failure to make the nation more resilient to the floods, storms and heatwaves that are increasingly battering Britain is already affecting millions of people across the country – with older and disabled people among those most at risk.

    Labour must deliver on its pre-election pledge to improve resilience and preparation by urgently drawing up a much tougher climate adaptation programme to prepare the UK for the enormous challenges of a dangerously warming planet, with those most affected involved in its planning.

    Kevin Jordan, said:

    I was told my house would be safe for a century, but 14 years after moving in it had to be demolished due to the accelerating rate of coastal erosion.

    The government’s adaptation plans are completely inadequate for dealing with the threat that climate change to people and the economy.

    The National Adaptation Programme should be ripped up and replaced with a new plan that better protects us all from the escalating impacts of the climate crisis.

    The government is not properly protecting disabled people

    Doug Paulley, said:

    Disabled people are disproportionately affected by the impacts of climate change, but once again they have been badly let down by an adaptation plan that completely fails to address the particular – and often severe – threats we face from extreme weather like flooding and heatwaves, and wider impacts such as power cuts during severe storms.

    The lack of planning makes me fearful that in an emergency disabled people won’t be properly protected.

    We urgently need a new adaptation programme that recognises the acute threat disabled people face and includes proper planning to protect them, such as mandatory care home procedures for protecting residents from flooding and extreme heatwaves.

    Leigh Day solicitor Rowan Smith said:

    For the first time in UK legal history, the High Court will have to determine whether the government’s policy to adapt to climate change is lawful, including as to whether our clients’ human rights have been breached. This is a truly landmark climate change case, which is likely to have far reaching implications for generations to come. We look forward to presenting our arguments as forcefully as we can at the hearing.

    Featured image and additional images via Friends of the Earth

    By The Canary

    This post was originally published on Canary.

  • One sentence from the coroner accidentally summed up why the NHS failed Maeve

    It has been day three of the inquest into the death of Maeve Boothby O’Neill, who died of myalgic encephalomyelitis (ME/CFS) on 3 October 2021, aged just 27 – but due to catastrophic failings from the NHS.

    The inquest, which began on Monday 22 July, has already been exhausting and distressing for those affected, directly and indirectly. You can read more on it here. But for some of us, it has also been highly frustrating – not least on 24 July. One line from the coroner in the case summed this up.

    Maeve’s inquest: Dr William Weir gives evidence

    Dr William Weir was giving evidence at Maeve’s inquest. He is one of the UK’s leading experts in ME/CFS. In the interests of transparency, I know William very well and speak with him on a regular basis. However, at Maeve’s inquest it was obvious that everyone else present, giving evidence, or mentioned in a professional capacity – including the coroner – had little idea what they were talking about, yet acted as if they did anyway.

    The line of questioning from the coroner revolved around William’s “opinions” on Maeve’s care versus what so-called ‘professionals’ at the Royal Devon and Exeter hospital carried out.

    We learned that, for example, Dr David Strain (who previously gave evidence on Tuesday 23 July) was sometimes at odds with William’s advice. Anyone who knows Strain’s history will not be surprised by this. I believe him to be at best, compromised, and at worst, a fool.

    One such occasion was on the issue of feeding.

    Disagreements over feeding

    Strain was adamant that Maeve’s vomiting would have continued regardless of what method of feeding the hospital gave her. This could have been nasogastric (NG). nasojejunal (NJ), or total parenteral nutrition (TPN).

    William disagreed. He noted that many severe and very severe ME/CFS patients also live with gastroparesis. This is where the stomach does not empty properly or voluntarily. William said this was likely due to a problem with the vagus nerve. He noted that NJ feeding would have overridden this issue and allowed Maeve to take adequate nutrition without vomiting – in combination with IV saline to increase her blood volume, which he believed was likely due to pituitary dysfunction.

    The hospital’s dismissal of William’s clinical opinions was a running theme – and still is in other cases where he’s involved. The Canary and the Chronic Collaboration have been supporting Carla Naoum who lives with very severe ME and is currently being abused by West Middlesex NHS hospital. I have personally had oversight of nearly a dozen emails containing evidence-based recommendations that William has sent to the hospital. It and its staff have ignored nearly all of them.

    Maeve could have been saved

    At Maeve’s inquest, this line of questioning around feeding continued for most of 24 July morning.

    Dr Ovi Roy from the Royal Devon and Exeter hospital was noted as saying IV feeding or TPN was the “most dangerous” option for Maeve. He said it would “significantly increase nursing needs”, would “increase disruption to Maeve”, and “increase the risk of sepsis”. Dr Roy said the latter would be “inevitable”, leading to a “worse quality of life”.

    William disagreed, said “risk/benefit analysis” would have shown TPN to be the best option to save Maeve’s life because “at least she would have been properly nourished”. While Roy noted the downsides, William said:

    nonetheless, Maeve clearly reached a point where she need further nutrition and the usual route was a difficult one

    Therefore she need TPN. Contrary to what the hospital believed (and the coroner repeated), TPN was, William said:

    not experimental in any way with people receiving it in the community and [it has] standarised procedures.

    Ultimately, William believed that if the Royal Devon and Exeter hospital had addressed Maeve’s feeding earlier and more robustly, and put aside their flawed beliefs, then they could have saved her life.

    The counsel representing the NHS Trust, whose name escapes me not least because of his robotic, monotone delivery, clearly thought he was on an episode of The Good Fight or another legal drama. His ideas-above-his-station, passive-aggressive line of questioning of William – which the good doctor repeatedly batted back at time – showed an NHS trust clearly feeling it had to defend itself; ergo – it knows it was in the wrong.

    There are not two sides to the ME/CFS argument

    However, this backwards and forwards – with William giving his clinical expertise and other medical professionals ignoring it – underscores Maeve’s tragic case. One line from the coroner perhaps summed it up best when she said:

    I’m trying to understand the different sides of the argument around feeding Maeve…

    Much like the climate crisis, management of ME/CFS is NOT about people’s opinions. There is scientific, evidenced-based approaches to management which have been shown to work – and then there’s arrogant professionals’ “dogma” as William often describes it to me as.

    There’s also the problem of people being in highly responsible jobs when they really shouldn’t be.

    One such example was a representative from the local authority’s adult social care team. She could not even pronounce ‘myalgic encephalomyelitis’ correctly in front of a coroner. We heard that essentially the local authority’s first response to Sarah Boothby’s requests for support for Maeve included looking for safeguarding risks.

    This is, undeniably, standard practice – which is exactly the problem.

    Local authority failings

    Local authorities have no provision, and no idea, how to deal with chronically ill people. For example, we heard from in the afternoon session that the council had failed to invite Maeve’s family or an advocate to crucial meetings surrounding discharge planning. Sarah said this led to the risk of dying of malnutrition and dehydration being lost in discussions.

    Also, in August 2021 when the Royal Devon and Exeter hospital discharged her again, the council failed to do an updated care plan for her. The council had also stipulated that care staff could not assist with food and fluids – leaving it to Sarah, Maeve’s mother.

    It began to emerge that (to me anyway) there seems to have been a complete breakdown of communication between the NHS trust and local authority. It got to the point where, in my opinion, someone from one of those bodies has been lying about what has gone on.

    The point being that, when someone presents as desperately ill as Maeve did, these people do not have a clue what to do. Generally, they get it wrong – and in Maeve’s case, catastrophically.

    Maeve’s inquest opens a microcosm of the problem

    Overall, we learned very little from day three of Maeve’s inquiry that many people affected by ME/CFS don’t already know.

    Arrogant yet ignorant – and quite frankly at times promoted beyond their intelligence – professionals dismiss the severity of how sick chronically ill women like Maeve are because they’re women. They ignore experts because their jobs enable their own God complexes to flourish. And they are so entrenched in failed academia that they are told is correct, that they cannot see the wood for the trees.

    An inquiry will not resolve this combination of dogma, misogyny, laziness, hierarchy, and arrogance. Nor will polite campaigns such as #ThereForME fix this – however good their intentions are.

    We are dealing with societal-level problems; Maeve’s case being a microcosm of them. If we learned anything from day three of her inquest, it is that even in death, her case and ME as an illness are still viewed as ‘debatable’ – a damning indictment of the system we live under, and the society we live in.

    Featured image supplied

    By Steve Topple

    This post was originally published on Canary.

  • Murdoch’s Times now pushing DWP benefit fraud propaganda for Labour

    The now Labour-led Department for Work and Pensions (DWP) has published its annual report. So predictably, it was prime opportunity for the right-wing hacks at the Times to punch down on benefit claimants. Top of its benefit claimant-bashing agenda – the usual – DWP benefit fraud, naturally.

    Only this time, there was a twist! A particular revelation must have the right-wing gutter publication spitting feathers after its wall-to-wall benefit fraud-busting hit pieces. Because as it turned out: the public now give less of a shit about people committing benefit fraud. Cue, a vitriol-fueled crusade chock-full of fact manipulation.

    Times’ latest DWP benefit fraud bullshit

    On Monday 22 July, the Times published an article which led with the headline:

    ‘Britons’ tolerance of fraud could cost benefits system £2bn a year’

    The Canary will spare you the effort of reading it. Spoiler: it’s not worth the subscription fee. The article’s key take-away? People are about to commit MORE benefit fraud. To be precise, according to the Times, it’s looking set to soar 5% year on year.

    Its basis? A DWP annual report which details supposed economic fraudulence. Specifically, these included exhibit a: an increase in fraud against businesses. Then – and this is a real clincher if ever there were – an uptick in… shoplifting. But if none of that was damning enough, the DWP had one last piece of incontrovertible evidence. That is, that attitudes to fraud have “softened” since 2016.

    You read that right. The public care less about benefit fraud than they did eight years ago. Ergo, expect more of it.

    If you’re not following how any of this proves that there’ll be a rise in benefit fraud, that’s because it’s palpable nonsense. Specifically, the report itself says that:

    The overall conclusion of this analysis is that there is an increasing trend in the underlying propensity towards fraudulent behaviour, which can be expected to place an upwards pressure on fraud in the welfare system. DWP has estimated through the Office for Budget Responsibility (OBR) expenditure forecasts that this long-term behavioural trend creates a headwind that would cause fraud levels to grow at around 5% per year without action to reduce it.

    Then, in reality, it based this claim solely on a flawed evaluation promulgating an “inexact science” (the DWP’s own words, not mine). In short, the DWP assessment looked at the so-called “propensity” to commit fraud overall. Moreover, this pertained to entirely disparate forms of crime, unrelated to benefit fraud. So it couldn’t actually show trends for DWP benefit fraud specifically: meaning of course, that the 5% figure is effectively bogus.

    ‘Dark money’ think tank has a take on it

    Not that this mattered to the Times. Two plus two equals five, or indeed *insert whatever alarming-sounding figure here*. Because the point is, the facts aren’t important. So long as the right-wing lapdog can drum up legitimacy for the new Labour government’s “tough on crime” publicity machismo, any figure will do.

    Of course, it’s not exactly unexpected from a lynchpin publication of the Murdoch media empire. That’s because the shit rag pumps out this bile hell-bent on demonising poor, chronically ill, and disabled people accessing the welfare system for a past-time.

    And for good measure, the DWP mouthpiece threw in a comment from the right-wing think tank with the best-worst misnomer – the Centre for Social Justice (CSJ). This is the brainchild of ostensible ex-DWP grim reaper and all-round Universal Credit-machinating cunt Iain Duncan-Smith. Calling it an “independent centre-right think tank”, the Times introduced its policy director Edward Davies saying:

    The pandemic seemed to somewhere break the social contract and pour petrol on harmful behaviours —we’ve seen that coming through in economic inactivity, school exclusions and now fraud.

    First, let’s clear this up. The CSJ is as far from “independent” as you can get. In actual fact, it’s a “dark money” think tank – in other words, it doesn’t disclose its funders. Open Democracy has rated it among the worst for transparency, which isn’t surprising given how tight-lipped it is about its financial benefactors.

    Plus, I guess anything passes as “centre” these days, since both major political parties have lurched so far to the right. Yet, the CSJ is regularly the haunt of a ghoulish line-up of right-wing politicians launching their cruel new policies. A recent example of this was Rishi Sunak and his “sicknote culture” strongman stunt, front and centre at a CSJ event. The CSJ’s CEO was a fan by the way, in case you were wondering.

    Fictitious fact-fiddling over DWP benefit fraud

    Largely, Davies’s odious spiel boiled down to suggesting that people are committing more benefit fraud because of some totally mysterious and unknown reason relating to the pandemic. This chimes perfectly with DWP boss Liz Kendall’s persistent post-election “economic inactivity” and back to work guff. Both aim squarely at chronically ill and disabled people claiming benefits. It’s almost like a global mass disabling and chronic illness triggering event never happened. Except of course, it did.

    What’s more, people couldn’t possibly be claiming benefits more now, after Tory pandemic corruption, Brexit, and rampant recession-teetering inflation sent the cost of living sky-rocketing. Or you know, because parasitic employers diddle workers out of job security and a livable wage, while reaping killer dividends. Nope, for the DWP and the CSJ, more benefit fraud must be afoot.

    However, here’s the thing. By now, the Canary must sound like a broken record saying this (take it up with the corporate media), but DWP benefit fraud is virtually non-existent. We’ve consistently shown how everything from Universal Credit fraud, to supposed Personal Independence Payment (PIP) fraud is either fictitious fiddling of the facts, or quite literally zilch.

    British public have ‘low integrity’? Now that’s rich

    Labour left MP and Mother of the House Diane Abbott called the Times article out for what it is:

    As did consultant clinical psychologist and chronic illness ally Dr Jay Watts:

    Moreover, if timing is everything, it’s telling that the Times put out this scapegoat-mongering piece the same day the DWP closed an inaccessible and discriminatory consultation on dangerous PIP reforms. The new Labour government has hugely distressed chronically ill and disabled people for its silence on this – which includes the Tories’ callous ‘voucher’ scheme vanity project proposals.

    Oh, and did I mention? If you’re one of those people who couldn’t give a toss about non-existent benefit fraud, while the DWP pays out an unlivable pittance, denies sick and disabled people payments, and kills tens of thousands of people, breaking the UNCRPD international disabled rights law in the process, then the DWP and the Times think you have “low integrity”. Go figure.

    At the end of the day, the Times article is nothing more than a sly pretext-setting exercise for Kendall’s fraud-busting fantasies. When she dons a bullet-proof vest and puffs out her chest Pursglove style in a police ride along raid-turned-DWP-publicity promo, don’t be surprised. It’s media trash like this Times piece that paved the way for it.

    Feature image via the Canary

    By Hannah Sharland

  • Disability activist was granted Freedom of the City – then couldn’t get on the stage

    It’s amazing how ableism can so quickly turn honor and celebration into insult and injury.

    That might sound like the start of a really niche horror movie, but it was actually a disability activist describing what should have been a career highlight.

    Anna Landre: Freedom of the City – except not

    Anna Landre is an award-winning campaigner and researcher who fights hard to have disabled people’s issues heard.

    Last week, she received one of the highest and most historic honours that can be bestowed on someone in London, the Freedom of the City, but it was marred by the fact that she couldn’t actually get up on the stage to collect the award – because she uses a wheelchair. Anna told me during a phone call that:

    I spent the whole ceremony holding back tears… I couldn’t pay attention to any of the speeches – I was just trying to hold it together.

    What Anna was most shocked by was that a ramp was available, but an organiser had just decided that she wouldn’t want to get on the stage:

    An events person came up and she was like “Oh, I heard that you were upset about not getting on the stage, I’m really sorry. We do have a ramp, I just thought you wouldn’t want it. I didn’t put it out today.”

    I mentioned to Anna that these sorts of things remind me as a disabled person of what it’s like growing up disabled and always getting left out. She said:

    Even when you do get invited to the party or get into the room or get the award, the experience is often a segregated one.

    Accessibility segregation

    Anna Landre says it’s important to use the word segregated, for its connotations to civil rights laws, citing this New York Times article by black wheelchair user Luticha Doucette. Anna said:

    It’s a continuous kind of ‘accessibility segregation’ that happens to us. And exemplifies how people purport to make decisions for us and assume we won’t mind.

    A spokesperson from the City of London Corporation told the Canary:

    The City of London Corporation would like to offer our sincerest apologies to Anna Landre for the inaccessible stage upon receiving her Freedom award. The City of London Corporation is fully committed to equity, diversity and inclusion and we are undertaking an urgent review to ensure accessibility at our buildings, facilities and events.

    Although this was an awful thing to happen to her, Anna doesn’t want this to be painted as an isolated incident as is often the case when these things go viral:

    It’s amazing that 29 years after the DDA and 14 of the Equality Act that accessibility is still a minefield in the UK.

    She was keen to impress that “things like this happen to most disabled people practically every single day if not multiple times a day”.

    A particular problem disabled people face is with public transport. Anna said:

    I call it ‘Access Roulette’. Let me spin this wheel and see if today is going to go well — you truly never know.

    Another problem is hotels:

    You have to do so much research to figure out where you can stay and then half the time it ends up being a waste of time anyway because it’s not actually an accessible room or there’s a platform lift that doesn’t work.

    It’s not about the incident – it’s systemic

    As Anna Landre says:

    It’s not about this incident; it’s not at all about the city of London or the Freedom of the City. It’s about this as a pattern — it’s awful this happened to me, but I want to use it to talk about this more broadly as a systemic issue. It’s illustrative of all the other violations of the Equality Act.

    Whilst we do have legislation such as the Equality Act, many disabled campaigners think the fact it can’t be enforced in everyday life (except through civil action) means its easy to ignore:

    You can’t call the police, for instance, to come and enforce it or report a violation. There’s nowhere you can call in the UK, unless the government sets up an ombudsman for enforcement.

    Anna says she’d “like to see this government show some leadership on what is one of the biggest issues facing disabled people”. She wants this government to focus on real issues facing disabled people:

    Instead of constantly hearing about disability benefits scroungers maybe the government can actually start enforcing disability access laws.

    Featured image via Anna Landre

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • Locked up against her will: meet Megan, forcibly detained in a learning disabled facility

    Content warning: this article continues descriptions of physical and emotional abuse that some readers may find upsetting.

    With the police’s announcement that there is a “national emergency” over a rise in violent crime against women and girls – with a record number of nearly 3,000 crimes reported daily – you would automatically assume that this crime is happening on the streets. Or maybe you would think that these crimes are happening in poorer areas of the country – you know, the really run down places that you wouldn’t want to be in on a cold, dark night.

    But what if I told you that this is happening to women and girls in loving, well-cared-for homes with the crimes being carried out by medical professionals and social services? Because it is.

    It is happening right now, as I type, to Megan McIntyre.

    On Tuesday 23 July a protest took place to raise awareness of an 18 year-old woman called Megan McIntyre who is allegedly being mistreated, physically and verbally abused, and held against her will in an NHS facility after being violently taken from her home:

    But this wasn’t by criminal thugs or gang members – well, not officially anyway.

    This was by the police, social services, and medical professionals.

    Megan McIntyre’s voice

    Megan is a Scottish and English national disabled gymnast and athlete:

    Megan

    She lives in Scotland with her mother Shona McIntyre who is also her legal guardian:

    Megan lives with autism, hypermobility, and is learning disabled. However, at the end of 2023 she developed avoidant restrictive food intake disorder (ARFID).

    Megan’s ARFID was triggered after an incident at her gym. For the last seven months she has begun losing weight – although she was eating three meals a day with snacks. As a concerned mother would, Shona took her daughter to see a dietitian who simply offered Megan “health shakes”.

    When the shakes arrived, Megan – noticing the difference in packaging and texture – refused to take them. Living with ARFID, she would only take her usual protein drinks. This was a clear sign of the illness that medical professionals completely disregarded.

    Megan continued to lose weight, with medical professionals and authorities accusing Shona of “not cooperating” and “not trying different things”.

    With Megan now losing 2kg every week and with no offer of a home IV drip, Shona asked her GP if Megan could be given nasogastric (NG) tube feeding at home. Shona believed this would be a solution to her daughter’s serious weight loss due to the ARFID.

    Sadly this was again refused. And the situation then got seriously worse.

    Ripped from her home

    On Monday 15 July whilst Megan and Shona were at home, three police vans, a doctor, a social worker, and nurses arrived at their property. As Shona wrote on a petition for Megan:

    They demanded to be let in or they would use force to break the door down.

    I let them in as they had a warrant. They found my daughter hiding under the bed.

    The fear in her eyes was awful, she ran and tried to get out the front door it was locked, down she ran into my bedroom in to the bathroom.

    By this point I couldn’t count how many people where swarming our home. I asked them to back off from the bathroom as she was getting so distressed, they refused, so I attempted to close the door a bit more for her privacy.

    The policeman was in the way, in my distress I hadn’t realised, he grabbed me and pinned me on the bed and put handcuffs on me, they held my ankles and pushed my face into the bed and told me I had assaulted an officer. My neighbour was here so witnessed it all and said I most definitely didn’t assault anyone.

    Then the screaming began. Screams that will haunt me for the rest of my life.

    Taken from her life

    As Shona was being handcuffed and held down by cops:

    Four police officers dragged [Megan] out of bathroom… she was trying to grab onto anything, I couldn’t see properly as they kept pressing my head into bed.

    When she saw me she yelled let go of her, Megan doesn’t speak much so this shows level of distress too. I didn’t see what happened after as they tore my vulnerable girl away from her safe space. My neighbour said she’s glad I didn’t see.

    They took her to an unknown place and for hours no one knew where she was. Eventually we were told. She had been taken to a locked adult Learning Disability Psych ward. I asked to see her they refused saying she was too distressed. I said I hope you haven’t pinned her and drugged her, they said they hadn’t.

    I called in the morning they said she had slept well….the reason for that was they had drugged her and pinned her without telling me so she was totally sedated so no wonder she slept!

    When Shona was finally told where her daughter was being held she was informed that she “will be safer at a hospital – not in the community”.

    The William Fraser Centre – accused of mistreatment

    Megan had been taken to the William Fraser Centre at the Royal Edinburgh Hospital, which is a unit for the provision of psychiatric care and treatment for learning disabled people. Clearly not a medical ward, Shona goes on to describe the horrors that she then found her daughter in:

    I visited the next morning at 10am, I was asked to leave at 11am after no explanation or answers to any of my questions were given! Megan clung to me and for the next two hours they tried to prise her arm and hands off me using force and restraint but she didn’t let go she held on through the pain.

    This went on for almost two and half hours.

    She had told me they lay on the back of her knees crushing them into the floor and she could hardly walk when she got up. She has hypermobility and is recovering from an knee injury.

    Shona has not been accused of neglect and is Megan’s legal guardian. Yet she has not received any paperwork, documents, or emails over the decision to remove Megan from her care.

    Whilst Megan has been under the care of the William Fraser Clinic she has continued to lose weight – 2kgs in just five days. Staff have allegedly forcibly manhandled and physically assaulted her, and even called her a “spoiled brat”.

    The hospital has also decided that Shona is not allowed on the premises to even see Megan. All of this has led Shona to having to set up a petition for legal support.

    Time to protest for Megan McIntyre

    Crucially, with a lack of ARFID specialists to help Shona managed to get in touch with an organisation called Autistic Inclusive Meets UK. Its CEO, activist and author Emma Dalmayne, told the Canary:

    When we heard about the unconscionable abuse Megan is suffering at the hands of mental health staff in The William Frasier Centre Centre, we knew we had to act; and act quickly. The staff responsible should be charged with assault.

    Megan should not be there, she is not mentally ill. Tragically, we have see many cases of autistic people being taken by force and placed into unsuitable settings, this won’t be the last person repeatedly assaulted and discriminated against. More education is desperately needed.

    So, along with Shona, friends, and allies they took direct action outside of the facility holding Megan. Using #MegansVoice and #FreeMegan they desperately tried to raise awareness of Megan’s situation:

    As Shona told the Canary:

    My beautiful and vulnerable daughter is dying

    As the protest from 11am-3pm continued outside of the William Fraser Centre the Canary was given footage showing Megan trying to hold Shona’s hand through the window of the facility and desperately seen trying to take “safe” food from her:

    The upsetting footage also shows Megan explaining that staff are hurting her, and that she just wants to go home with her mum:

    The Canary contacted NHS Lothian, which runs the William Fraser Centre, for comment but it had not responded at the time of publication.

    Violence against women and girls: a systemic emergency – in the system

    Shona will continue to protest in the hope of getting the right support for Megan – and to make sure that this doesn’t happen to anyone else. Yet we are as chronically ill and disabled people constantly left in this position.

    From people living with myalgic encephalomyelitis (ME/CFS) to people living with postural orthostatic tachycardia syndrome (POTS), from #MaeveInquiry to #SaveCarlasLife and #BringMillieHome, there is a clear, systemic issue that needs to be addressed here.

    Why are so many of these women’s medical needs dismissed, leaving them at risk of violence against them?

    Just why are so many mothers disbelieved and not taken seriously when they know their child better than anyone else?

    And why are so many women’s serious conditions completely disregarded by our NHS – from ARFID to instabilities of the neck like craniocervical and atlantoaxial?

    And why does it seem that this mentality is spreading within our society and also within practiced medicine?

    What more can chronically ill and disabled people do? What more can Shona do?

    We have protested, we have blocked roads, we have made documentaries, and we have gone to parliament. Shona and so many of us are shouting as loud as we can. Yet still, no one seems to hear us.

    You can sign the petition in support of Megan here. 

    Featured image and additional images and videos supplied

    By Nicola Jeffery

    This post was originally published on Canary.

  • The DWP and NHS will be working together if Labour’s Blairites get their way

    A new report has offered a revealing insight into the Labour-led Department for Work and Pensions (DWP) likely “back to work” plans over the next five years. Crucially, it advocates for greater so-called integration of the DWP and the NHS. Of course, it’s but another move to coerce chronically ill and disabled people into work and stop their benefits.

    In other words, Labour is picking up where the Tories left off sinking the DWP’s claws into the NHS. However, it’s little wonder when the study was spearheaded by Alan Milburn. That would be, the 90s and early 2000s former Blair health secretary responsible for opening the floodgates to rampant privatisation in the healthcare system.

    Dangerous DWP NHS integration plans

    On Tuesday 23 July, former health secretary under Tony Blair’s New Labour Alan Milburn government will release a report into so-called “longterm worklessness”.

    Notably, this will articulate the findings of a study into “economic inactivity” and the benefits system. Crucially, as the Guardian reported ahead of its publication, this will call for the new Labour government to:

    integrate health services into job centres to unlock a hidden workforce of about 3 million “economically inactive” people who are without jobs

    Unsurprisingly, Milburn is set to push this plan to new DWP secretary Liz Kendall. And it’s likely the right-wing boss of Labour’s “Back to Work” blitz will eat this up. Throw in a weasely Wes “privatise the NHS” Streeting and you have the perfect necrocapitalist storm brewing. Low and behold, the Guardian stated that:

    Milburn is also understood to have been in touch with Liz Kendall, the work and pensions secretary, and Wes Streeting, the health secretary, with Keir Starmer’s government keen to address economic inactivity as it pushes for higher growth.

    However, his ideas aren’t exactly anything new. Already, Kendall has flirted with the idea of DWP and NHS integration. In March, she told Murdoch-mouthpiece the Times her plans for doing precisely what Milburn is proposing in the new report.

    What the new study findings now offer is a convenient pretext for the Kendall-Milburn-Streeting unholy trinity of corporate capitalist cronyism.

    Milburn’s corporate capitalist DWP NHS agenda

    Significantly also, Milburn’s new role as Streeting’s health adviser could lend weight to this. As the Canary’s HG previously reported, Milburn has:

    his fingers in many different private healthcare pies

    In particular, she reported how Milburn’s has paid himself and his family over £8m since 2016 from his private health consultancy. So why not dabble in the business of coercing chronically ill and disabled people into the exploitative capitalist workforce while he’s at it?

    According to the Telegraph Milburn said:

    Equally if you are getting benefits and could work you should have to engage with those services. Government can help but people need to help themselves.

    Here we go again. Milburn’s engagement guff is laced with the prevalent demonising trope that the corporate media and political establishment has manufactured against benefit claimants. That is, his rhetoric is a by-product of precisely the “scrounger” rhetoric that has pervaded justification for the Tories’ repeated dangerous social security reforms over the last 14 years.

    In a nutshell, this is the propaganda that sick and disabled people are “work-shy” or “shirkers”.

    Consequently, the Labour sycophant is jumping on this bandwagon. His report can loan cover to the new government as it drives through its capitalist back to work agenda.

    The DWP’s ‘deserving’ disabled and chronically ill claimants

    In the Blair era, it was Milburn who ushered in the age rife with NHS privatisation. Effectively, he started the private sector takeover of the health service, and the Tories continued it. In the same vein, Blair’s then Department of Health, though not under Milburn at the time, initiated so-called DWP and NHS co-working. Again, the Tories have gone on to embed this, increasingly blurring the lines between the machinery of health and welfare.

    But significantly, the Canary’s Steve Topple has detailed before how Blair’s government instigated ‘Individual Placement and Support (IPS)’ services. The DoH described these as vocational services for people with severe mental health problems.

    Sound familiar? Kendall has banged on about her plans for ‘helping’ chronically ill and disabled people into employment. At a Jobcentre in Leeds fresh after the election, she expressed that:

    More disabled people and those with health conditions will be supported to enter and stay in work

    Now, Milburn’s report is sounding alarmingly IPS mark two. The right-wing Telegraph pinpointed people living with “mental health and spinal issues” as examples of those on long-term sick.

    Of course, the implication here is that those living with these types of conditions should be in work. Ergo, they should not be claiming benefits.

    In effect, it’s the Victorian notion of deserving and undeserving poor playing out across welfare policy on chronically ill and disabled people.

    The ‘hostile environment’ of welfare

    Ultimately, the government is deciding who is disabled or sick ‘enough’ to get social security. To many chronically ill and disabled people, this will send alarm bells blaring.

    South Asian migrant justice activist and writer Harsha Walia has described how the nation-state weaponises borderisation of societal spaces to exclude migrants. In particular, she has drawn attention to the infiltration of the border regime into workplaces, expressing how:

    The production and policing of the border becomes a quotidian workplace ritual as law enforcement, doctors, teachers, landlords, and social workers regularly report migrants to border agencies.

    The UK’s Prevent scheme is one such example of the Home Office’s violent border regime worming its way into places of employment and learning.

    In much the same way, the DWP surveillance of benefit claimants has involved an almost ‘barrierisation’ – the outsourcing of the department’s policing functions into public services. So, Topple has previously branded this the “hostile environment for sick and disabled people” for good reason.

    Now, staunch Blairite Kendall, weasely Wes, and his new Blair-era health advisor look set to crank this up a notch. Invariably, the New New Labour, and continuity Tory government will push chronically ill and disabled people back to work at any cost.

    In Labour’s topsy-turvy neoliberal “changed” UK, Jobcentre staff will decide if you’re too sick to work. Then, healthcare professionals will push people into it regardless. Or in other words, it’s more of the same ableist “sick note culture” war, just wrapped up like caring, when they couldn’t give a crap.

    Feature image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • The DWP and NHS will be working together if Labour’s Blairites get their way

    A new report has offered a revealing insight into the Labour-led Department for Work and Pensions (DWP) likely “back to work” plans over the next five years. Crucially, it advocates for greater so-called integration of the DWP and the NHS. Of course, it’s but another move to coerce chronically ill and disabled people into work and stop their benefits.

    In other words, Labour is picking up where the Tories left off sinking the DWP’s claws into the NHS. However, it’s little wonder when the study was spearheaded by Alan Milburn. That would be, the 90s and early 2000s former Blair health secretary responsible for opening the floodgates to rampant privatisation in the healthcare system.

    Dangerous DWP NHS integration plans

    On Tuesday 23 July, former health secretary under Tony Blair’s New Labour Alan Milburn government will release a report into so-called “longterm worklessness”.

    Notably, this will articulate the findings of a study into “economic inactivity” and the benefits system. Crucially, as the Guardian reported ahead of its publication, this will call for the new Labour government to:

    integrate health services into job centres to unlock a hidden workforce of about 3 million “economically inactive” people who are without jobs

    Unsurprisingly, Milburn is set to push this plan to new DWP secretary Liz Kendall. And it’s likely the right-wing boss of Labour’s “Back to Work” blitz will eat this up. Throw in a weasely Wes “privatise the NHS” Streeting and you have the perfect necrocapitalist storm brewing. Low and behold, the Guardian stated that:

    Milburn is also understood to have been in touch with Liz Kendall, the work and pensions secretary, and Wes Streeting, the health secretary, with Keir Starmer’s government keen to address economic inactivity as it pushes for higher growth.

    However, his ideas aren’t exactly anything new. Already, Kendall has flirted with the idea of DWP and NHS integration. In March, she told Murdoch-mouthpiece the Times her plans for doing precisely what Milburn is proposing in the new report.

    What the new study findings now offer is a convenient pretext for the Kendall-Milburn-Streeting unholy trinity of corporate capitalist cronyism.

    Milburn’s corporate capitalist DWP NHS agenda

    Significantly also, Milburn’s new role as Streeting’s health adviser could lend weight to this. As the Canary’s HG previously reported, Milburn has:

    his fingers in many different private healthcare pies

    In particular, she reported how Milburn’s has paid himself and his family over £8m since 2016 from his private health consultancy. So why not dabble in the business of coercing chronically ill and disabled people into the exploitative capitalist workforce while he’s at it?

    According to the Telegraph Milburn said:

    Equally if you are getting benefits and could work you should have to engage with those services. Government can help but people need to help themselves.

    Here we go again. Milburn’s engagement guff is laced with the prevalent demonising trope that the corporate media and political establishment has manufactured against benefit claimants. That is, his rhetoric is a by-product of precisely the “scrounger” rhetoric that has pervaded justification for the Tories’ repeated dangerous social security reforms over the last 14 years.

    In a nutshell, this is the propaganda that sick and disabled people are “work-shy” or “shirkers”.

    Consequently, the Labour sycophant is jumping on this bandwagon. His report can loan cover to the new government as it drives through its capitalist back to work agenda.

    The DWP’s ‘deserving’ disabled and chronically ill claimants

    In the Blair era, it was Milburn who ushered in the age rife with NHS privatisation. Effectively, he started the private sector takeover of the health service, and the Tories continued it. In the same vein, Blair’s then Department of Health, though not under Milburn at the time, initiated so-called DWP and NHS co-working. Again, the Tories have gone on to embed this, increasingly blurring the lines between the machinery of health and welfare.

    But significantly, the Canary’s Steve Topple has detailed before how Blair’s government instigated ‘Individual Placement and Support (IPS)’ services. The DoH described these as vocational services for people with severe mental health problems.

    Sound familiar? Kendall has banged on about her plans for ‘helping’ chronically ill and disabled people into employment. At a Jobcentre in Leeds fresh after the election, she expressed that:

    More disabled people and those with health conditions will be supported to enter and stay in work

    Now, Milburn’s report is sounding alarmingly IPS mark two. The right-wing Telegraph pinpointed people living with “mental health and spinal issues” as examples of those on long-term sick.

    Of course, the implication here is that those living with these types of conditions should be in work. Ergo, they should not be claiming benefits.

    In effect, it’s the Victorian notion of deserving and undeserving poor playing out across welfare policy on chronically ill and disabled people.

    The ‘hostile environment’ of welfare

    Ultimately, the government is deciding who is disabled or sick ‘enough’ to get social security. To many chronically ill and disabled people, this will send alarm bells blaring.

    South Asian migrant justice activist and writer Harsha Walia has described how the nation-state weaponises borderisation of societal spaces to exclude migrants. In particular, she has drawn attention to the infiltration of the border regime into workplaces, expressing how:

    The production and policing of the border becomes a quotidian workplace ritual as law enforcement, doctors, teachers, landlords, and social workers regularly report migrants to border agencies.

    The UK’s Prevent scheme is one such example of the Home Office’s violent border regime worming its way into places of employment and learning.

    In much the same way, the DWP surveillance of benefit claimants has involved an almost ‘barrierisation’ – the outsourcing of the department’s policing functions into public services. So, Topple has previously branded this the “hostile environment for sick and disabled people” for good reason.

    Now, staunch Blairite Kendall, weasely Wes, and his new Blair-era health advisor look set to crank this up a notch. Invariably, the New New Labour, and continuity Tory government will push chronically ill and disabled people back to work at any cost.

    In Labour’s topsy-turvy neoliberal “changed” UK, Jobcentre staff will decide if you’re too sick to work. Then, healthcare professionals will push people into it regardless. Or in other words, it’s more of the same ableist “sick note culture” war, just wrapped up like caring, when they couldn’t give a crap.

    Feature image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Disabled people took over Parliament Square to once again fight for their basic rights

    Chronically ill and disabled people took over Parliament Square to demand that the new Labour Party government undo years of damage caused by the Tories. From the DWP to social care via housing and hate crime, the system and its proponents have wilfully marginalised millions of people. Now, those people are demanding their rights back. But will chronically ill and disabled people’s calls be heard?

    Disabled people: out again to protest their basic rights

    Disabled People Against Cuts (DPAC) led a coalition of campaign groups in organising the ‘Disabled People Demand’ demo. From 12pm on Thursday 18 July, people gathered on Parliament Square’s green on what was one of the hottest days of the year:

    The turnout was one of the largest seen for a DPAC demo since before the pandemic. Over 100 people were present:

    Speakers included John McDonnell MP, Ben Sellers from People’s Assembly, and Paula Peters from DPAC:

    John McDonnell speaking to Nicola Jeffery. He is wearing a shirt and trousers, she has bright pink hair and is wearing a black top and patterned flared trousers disabled people

    There was also performances from artists and musicians, and artwork on display:

    As DPAC itself said, the overriding thrust of the event was that:

    Closing the door on the past doesn’t just mean closing it on the policies of the past – but also on the negative and exclusionary practices of the past too. This day will celebrate our communities survival through austerity, benefit cuts, assessment torture, covid and cost of living crisis – and a reminder that too many of us didn’t survive them.

    We have a long history of devising our own solutions to whatever crisis we find ourselves in. That’s why we are taking this opportunity to present our solutions to political decision makers and to the rest of the people in the UK. We are putting what we believe are both possible and achievable out there.

    So, there’s no hiding place from them. Nobody can say they didn’t know.

    We will use them as a marker to measure the success or failure of the next government.

    Various demands

    DPAC and its allies have created a template of demands that they want the new Labour Party government to enact. The core demands are:

    • Legislate to fully incorporate the UN Convention on the Rights of Persons with Disabilities (UNCRPD) into UK law.
    • A “triple lock” on annual benefit rate increases.
    • Legal Right to Independent Living with a National Independent Living Service.
    • Introduce a national requirement for all new build homes to be accessible and 10% to be wheelchair accessible.
    • A right to mainstream education and to education in fluent British Sign Language for Deaf and Disabled students.
    • A fully integrated, fully accessible, affordable publicly owned transport system for all.
    • A right of disabled access to built and natural environments.
    • Introduce mandatory two-week timeframe for reasonable adjustments and an enforcement framework which does not fully depend on an individual.
    • An independent public inquiry into the deaths and maltreatment of disabled children and adults incarcerated in mental health institutions.
    • Legislate to abolish forced detention and treatment of people on mental health grounds.
    • No Assisted Dying.
    • Adequate provision of technical aids and equipment, eg. wheelchairs, and adaptive communication aides for people who are nonverbal.

    There was a small police presence throughout the afternoon. The Canary noticed ‘blue bibs’ (police liaison officers) asking attendees about when the next demo was going to be. This, as group Netpol has repeatedly warned, standard behaviour from these pretend cops whose job on the ground is intelligence gathering. Fortunately, everyone there was wise to this and kept schtum.

    A mixed bag of speakers

    The rhetoric coming out of the event on 18 July was a mixed bag. A speaker from the Disability Poverty Campaign Group (DPCG) was there talking about the letter that it had written to Keir Starmer. As the Canary’s Hannah Sharland previously noted, it really didn’t go far enough – in fact, the letter felt like a begging bowl for disabled people, rather than anything ‘demanding’.

    Moreover, the speaker from DPCG whose name the Canary missed on 18 July name-dropped Mind – a charity which should not have been anywhere near this kind of event, nor had anything to do with chronically ill and disabled people’s campaigning more broadly – given its historical involvement with the DWP.

    This was juxtaposed by the always fiery and passionate Paula Peters – who sent a clear warning to the new Labour government while also remembering allies who had died during the 13 years DPAC had been active for. She said:

    Many people are not here today because they did not survive. We will never forget our disabled friends, relatives, activists, and trade unionists. We hold them in our hearts and in our minds today, tomorrow, and always. And we promise this: that we will continue the fight that they began; that we honour them by not mourning them, but my organising, by mobilising, and fighting on for equality and social justice.

    The Chronic Collaboration’s Nicola Jeffery spoke of how having a Labour Party government won’t make any difference to chronically ill and disabled people:

    We are here because we know that regardless of which political party is in power or what policies they choose to implement, we need a wider societal change in the way that disabled people and chronically ill people are treated…

    We have already witnessed the United Nations find our country guilty of grave and systematic violations of disabled people’s civil and human rights and we have seen nothing change.

    We have already witnessed the treatment of chronically ill people being described in Parliament as the greatest medical scandal of the 21st century and we have still seen none change. This is not good enough and we as chronically ill people and disabled people demand better. We as chronically ill and disabled people demand more.

    The ball is in Labour’s court

    Now, the ball is in Labour’s court. So far, the signs have not been good. It seems that the party will not treat chronically ill and disabled people much differently to how the Tories did.

    What came across from DPAC’s event was that this was far less of a protest than normal. Road blocks were out, and music and art were in. This seemed more of a gathering, less of a demo.

    One can only assume that this paring back of tactics by DPAC and others is to give Labour a technical chance to prove they’re not a reincarnation of the Conservative Party and actually start to work with chronically ill and disabled people, instead of torturing and killing them.

    It doesn’t sound like a big ask – but based on the historical evidence, it clearly is. Unfortunately, it feels likely that DPAC and others will be back to blocking roads and blockading parliament sooner rather than later.

    Hopefully, Labour will prove us wrong.

    Featured image and additional images via the Canary

     

    By Steve Topple

    This post was originally published on Canary.

  • Maeve Boothby O’Neill’s inquest has already highlighted how little doctors understand ME/CFS

    Monday 22 July was the start of an inquest into the death of a young woman with myalgic encephalomyelitis (ME/CFS). As written in MEpedia, Maeve Boothby O’Neill:

    was a young British woman who died from very severe ME on October 3, 2021, aged just 27 years old.[1][2] Maeve Boothby O’Neill was a promising writer, a natural scholar and talented at languages. She was diagnosed after 4 years of unrecognised illness, shortly before her 18th birthday. She was writing The Alchemists, the first of a series of novels, set on Dartmoor where she grew up in Devon, England, when she died.

    Maeve’s mother Sarah Boothby and father Sean O’Neill, who is a journalist for the Times, have been publicly trying to raise awareness of their daughter’s death along with the appalling treatment of ME patients. But we have already learned from the inquest just how little doctors know about ME and how little they can do to help patients.

    What REALLY is ME/CFS?

    ME/CFS is a debilitating chronic illness that in its most severe form can cause symptoms that are worse than some late stage cancers and sometimes death in patients living with the condition. It is defined by the hallmark symptom of post-exertional malaise (PEM), which is often disregarded/misrepresented as fatigue. According to the NHS website:

    Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition that can affect different parts of the body. The most common symptom is extreme tiredness. The cause of ME/CFS is unknown.

    ME/CFS can affect anyone, including children.

    Of course, “extreme tiredness” downplays just how bad ME is. Also known as ‘Yuppie Flu’ in the 1980s, this condition has a long history of being dismissed or even psychologised by doctors – even though it has killed people, including Maeve.

    Similar to long Covid, many patients remember their symptoms beginning after catching a virus, leading many to believe that this is a post-viral illness or condition. Unfortunately many patients also discover that the only support offered to them by the NHS is cognitive behavioural therapy (CBT) which is again viewed as a dismissal of patients – effectively blaming them for their own symptoms.

    The irony of this condition is that many patients find themselves living with post-traumatic stress disorder (PTSD) as a result of the years they often face being dismissed by various health professionals just to have their condition taking seriously.

    Many of these patients also live with other conditions like postural orthostatic tachycardia syndrome (POTS), gastroparesis, and dumping syndrome which also very rarely get diagnosed properly.

    From PACE to PTSD with ME/CFS

    The extent of some ME/CFS patients’ symptoms are quite shocking – yet medical professionals seem surprised, even unable to cope, when they have to face the reality of the illness.

    As a person diagnosed with ME, I remember going to an appointment with my partner, explaining my situation to a GP – and they literally broke down in tears in front of us; disgusted at the state of both the NHS and how people with these conditions and chronic illness are treated, feeling helpless.

    During today’s opening day of Maeve Boothby O’Neill’s inquest we also learned that her GP has developed PTSD as a direct result of Maeve’s deteriorating condition, her death, and its aftermath.

    This speaks volumes on firstly how little current doctors and GPs understand ME, and secondly how little support they can offer, if they can offer any at all – effectively leaving patients with psychologisation as a treatment.

    As many patients know, this treatment approach unfortunately has links to a part-DWP funded clinical trial.

    It’s not just ME

    Whilst this inquest is taking place, there are also currently three other women that the Canary is aware of that are living with severe/very severe ME/CFS.

    We have recently reported on #BringMillieHome, #SaveCarlasLife, and Karen Gordon. All of these women have again faced neglect and mistreatment, and are desperate for support.

    But these are just the ones we know about via social media. There are so many more people suffering in silence. There are an estimated 250,000 people living with ME in the UK – which is likely a huge underestimate. So what, if anything, is actually being done to support these women and the thousands of other adults and children that have been diagnoses of ME?

    Can anyone help ME?

    In 2023 campaign group the Chronic Collaboration along with many other ME/CFS patients, groups, and allies successfully (both online and directly outside) forced NICE to remove graded exercise therapy (GET) from its ME guidelines. This treatment had for many years caused patients extreme harm, making their symptoms worse and often irreparable.

    Along with Maeve’s inquest this week and a new Labour government, the Canary has heard that John McDonnell MP will be asking a question in parliament regarding ME, which we will be reporting on.

    It’s not the first time ME has been mentioned in parliament – most recently with a Westminster Hall debate. Former SNP MP Carol Monaghan stated that ME and the treatment of patients with it was the potentially the ‘biggest medical scandal of the 21st century’.

    But thankfully the voices fighting for this chronic condition are getting louder. So, it will only be a matter of time before they will have to be listened to.

    Featured image via the Canary

    By Nicola Jeffery

    This post was originally published on Canary.

  • DWP PIP consultation set to close as a long Covid group calls out Labour government

    Today – Monday 22 July – is the final day to respond to the previous Tory government’s controversial consultation on key disability benefit reforms. This included the Conservative-led Department for Work and Pensions (DWP) notorious plans to replace the Personal Independence Payment (PIP) with a voucher scheme.

    Multiple disability rights nonprofits have repeatedly urged the new Labour government to scrap the reforms.

    Now, a chronic illness community group has spoken out against the “inaccessible” consultation and its sweep of cruel proposals. With just hours to go before it closes, the COVID Support Community has penned an open letter to the new Labour government to voice their considerable concerns on the problematic consultation and its alarming reform ideas.

    DWP PIP reforms: controversial consultation closing

    As the Canary previously wrote:

    Under the previous Conservative Party government, the DWP launched plans to overhaul the benefits system. When it came to PIP, the then Tory-led department put forward proposals to cut the number of claimants and implement new supposed cost-saving alternatives.

    Significantly, this included Sunak’s notorious plans to replace the disability benefit with a voucher scheme.

    Moreover, in the DWP PIP consultation:

    Besides the voucher scheme proposal, the DWP put forward similarly ill-thought and punitively restrictive options. This included a catalogue or shop scheme, with approved items. As well as this, it suggested possible a receipt-based system.

    The Canary has consistently pointed out a number of glaring issues with the proposals. Specifically, these concern how they will cruelly impact disabled and chronically ill people.

    Now, a community group representing long Covid and myalgic encephalomyelitis (ME/CFS) patients has shared its efforts to hold the new Labour government to account with the Canary. The COVID Support Community operates an online support forum for individuals living with these devastating chronic illnesses.

    The two post-viral onset multi-system diseases share many pathological overlaps. In fact, studies have already shown that over 50% of people living with long Covid meet the diagnostic criteria for ME. Invariably then, both chronic illnesses therefore share a suite of devastating symptoms.

    This includes cognitive dysfunctions – which some patients living with the post-viral diseases typically call brain fog. As it says on the tin, this is an umbrella term for a range of cognitive impairments, such as memory, language and information-processing, and speaking difficulties. Given the multitude of cognitive symptoms associated with both conditions, the COVID Support Community began by highlighting that the consultation was “inaccessible and difficult to engage with” for many patients with these.

    As well as this, the main feature of ME, and many with long Covid is post exertional malaise (PEM). This involves a disproportionate worsening of many of the body’s systems, and resultant symptoms after minimal physical, mental, social, or emotional activity. For this reason, the letter therefore expressed how:

    Consequently, the most vulnerable among us, including children and those with the most severe conditions, reported being unable to respond at all, therefore, we are speaking on their behalf too and understand this.

    Consultation full of ‘leading, discriminatory’ questions

    As well as the restrictive nature of the consultation, the open letter also slated the “leading, discriminatory” questions. Crucially, it argued that many of these, the DWP had based on:

    misconceptions and false assumptions, particularly concerning individuals with chronic health conditions such as LC and/or ME/CFS.

    Among them for instance, it highlighted the consultation’s presumptions that:

    • All people have access to healthcare professionals or a diagnosis
    • That there are clear medical diagnosis pathways and treatments
    • Medical professionals treat patients equally, and offer compassionate care

    People living with ME, and long Covid in more recent years know that in each of these – it is simply not the case. Notably, a pervasive lobby of medical professionals have pushed the idea that the disease is psychological – in other words, all in peoples’ heads.

    The result has been what a parliamentarian has previously called one of “the biggest medical scandals of the 21st century”. For patients, this has meant stigma, abuse, gaslighting, and neglect from all sides. Family, friends, the welfare system, and healthcare settings have meted this out against people living with ME to horrendous, and sometimes even deadly effect.

    As the DWP PIP consultation closes, today, the inquest into the death of 27-year-old Maeve Boothby-O’Neill begins in Devon. Daughter of Times journalist Sean O’Neill, Maeve lived with severe ME, meaning she was entirely bedbound, unable to eat or drink, and fully dependent on others for her care. In hospital, doctors denied her the correct feeding procedures that could have saved her life.

    Meanwhile, as the Canary has previously reported, NHS hospitals have continued this appalling treatment of severe ME patients. Right now, one such patient is 23-year-old Carla Naoum. West Middlesex hospital is neglecting and abusing Carla, and as a result, her condition continues to deteriorate.

    The reality then, is just as the COVID Support Community said. Critically, its letter stated how the consultation’s assumptions would:

    discriminate against or disadvantage those who are too unwell to have been able to access care or diagnostics.

    On top of this, it drove home how:

    Essential equipment and services should be treated as a medication not a lifestyle choice.

    Worsening health and causing distress

    One of the issues it therefore highlighted was that the DWP PIP consultation’s emphasis on non-cash alternatives. Specifically, it showed how this could massively discriminate against people living with conditions like long Covid and ME.

    The Letter stated that:

    The dearth of research means that evidence-based treatments are extremely limited or non-existent, and no cure is currently available.

    This is relevant when considering how we would access treatments, services and care, when none have been approved due to the factors described above, especially within closed systems such as vouchers. We have a complex multisystem condition that requires individual management and support that is unlikely to fit neatly into categories. Cash payments allow us to manage our conditions proactively based on our unique needs.

    Additionally, it also noted a number of issues with the proposals involving reimbursement. For example, the letter pinpointed how this would disproportionately impact poor claimants. In short, those who might not be able to afford the upfront costs of treating or managing their medical condition.

    Largely, it reminded the new Labour government that PIP is a disability benefit. That is, PIP is precisely intended to redress the additional costs of living with medical conditions and as a disabled person in a society designed for non-disabled people. In other words, it’s about making things more equitable. It’s there to help disabled and chronically ill people afford treatment, medication, and aids that improve their health. In theory, though of course, not always in reality, this would make it more possible for them to live fulfilling lives.

    As such, it presented a number of these extra cost burdens for people living with long Covid and/or ME. These include things like higher costs of everyday essentials. This would be things like electric and heating bills, food deliveries, and increased transport costs for instance.

    DWP PIP not fit for purpose

    What’s more, the letter detailed how it isn’t solely the Tories’ controversial new proposals for DWP PIP that has caused harm. On top of underscoring the multitude of issues with these, and the consultation itself, COVID Support Community also pointed out the DWP’s current PIP is not fit for purpose.

    Members of the forum articulated the immense distress and health toll the DWP PIP process has taken on people living with long Covid and ME. The letter included a number of these testimonies. One expressed how they:

    found the entire PIP process absolutely excruciating. Severe cognitive dysfunction made it extremely difficult to talk, find words, or articulate myself. Rather than believing doctors’ reports, it felt like the onus was on me to explain my invisible little understood complicated condition right when I was struggling to communicate basic English. The pressure to feel understood and believed was overwhelming, and the process was labour-intensive and emotionally draining. The three-hour phone call was gruelling and resulted in a crash that lasted 3-4 weeks. I’m very grateful my application was accepted, especially since I’ve heard others weren’t as fortunate.

    Another, indeed less fortunate claimant said that:

    PIP process has impacted on my mental wellbeing and caused my health situation to worsen overall. I have had to go to tribunal despite overwhelming evidence causing distress and taking me away from my ability to focus on my recovery.

    Chronically ill community make ‘sacrifices’ to share their views

    Overall, the letter set out how the current DWP PIP system, and the Tories’ plans for reform falls short. The group put forward a series of recommendations. These were borne out of members’ personal experience of living with these devastating chronic illnesses. On top of this, it drew on the challenges they encountered trying to access the UK’s social security set up.

    Of course, the nature of both conditions meant that the open letter came at great personal health risks to its organisers. Coordinating authors signed off the letter emphasising this:

    we would like to acknowledge the immense effort and energy it took for members of the LC and/or ME/CFS community to participate in discussions and compose this letter, particularly given our energy-limiting conditions. Advocating for our needs is incredibly challenging given our symptoms including cognitive dysfunction and fatigue. This reflects our deep passion for the critical support PIP payments provide in managing our conditions independently and prioritising our needs.

    Therefore, the COVID Support Community called on the Labour government to recognise the “sacrifices made” to share their views.

    To date, new Labour DWP ministers have yet to confirm the government’s plans for PIP. However, a Mirror article reported post-election that Labour insiders had hinted the government would review the consultations responses.

    Given all this, it’s long past time Labour did what it promised in its manifesto. Specifically, it pledged that disabled people’s “views and voices will be at the heart of all we do”.  If that’s truly the case, it would now unreservedly do away with this flawed, deeply discriminatory consultation, and the Tories’ dangerous PIP plans to boot.

    You can read the full letter, with its recommendations for the new Labour government here.

    Feature image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • When are we going to talk about the corporate media’s complicity in Covid deaths?

    The first report from the Covid-19 inquiry came out yesterday and told us what many of us already knew – the government had failed to prepare for a pandemic and in turn, had failed to protect the public.

    Covid-19 Inquiry: the wrong pandemic

    Chair of the inquiry, baroness Heather Hallett said:

    “Never again can a disease be allowed to lead to so many deaths and so much suffering,”

    One group of people disproportionately failed was disabled people. In England six in 10 covid deaths were disabled people, this rose to seven in 10 in Wales. 

    At the start of the pandemic, disabled people were told to shield whilst given no other support. Whilst the government focused on “getting back to normal” we feared that we’d be left to die if ‘do not resuscitate orders’ were put on us without our knowledge.

    Every time “freedom day” and more restrictions were loosened we were treated like we wanted people caged up indoors forever, whilst we were traumatised from seeing our community decimated.

    Whilst they partied, we feared that we would be one of the bodies that would be piled high.

    Whilst the report focuses on preparedness for the pandemic, it’s still pretty clear how little fucks Boris and his cronies gave about allowing disabled people to live.

    Vulnerable what?

    The report wholly criticises the government for preparing for the wrong pandemic – a flu outbreak – but even then they weren’t bothered about protecting “vulnerable” people (I hate that term btw).

    The 2019 National Security Risk Assessment made only passing comments on the risks associated with age and health. The influenza-type pandemic scenario only included a short section on the “impact on vulnerable groups”.

    The report draws on a familiar stereotype for disabled people, that we’re a burden to society and service:

    It was too narrowly drawn and had too limited focus on the impact on public services and staff capacity.

    The main problem with any plans for “the vulnerable” was that none of them could decide on a definition of “vulnerable”. I wish I was joking but one of the recommendations is literally for the government to decide what vulnerable means.

    So whilst they were lumping us all in as “vulnerable” and using it as an excuse for us dying, none of them could actually agree on what that meant. Which, as it was so vague, meant it was easier to apply to people who weren’t more susceptible to infection such as learning disabled people. 

    But there’s one thing that isn’t being covered in any of the inquiries – the part the media played.

    Where’s the corporate media’s accountability?

    In all my years reporting on the issues disabled people face, I’ve never felt as ignored by editors as I did during the early years of the Covid-19 pandemic. Here I was – a disabled journalist with a history of writing about my experiences – whilst a deadly pandemic was ripping through the world and mostly affecting disabled people, and suddenly nobody wanted to know. 

    Whilst I and other disabled journalists and activists were trying to get the word out about our community having ‘do not resuscitate orders’ put on them in hospitals, the media focused on how awful it was to be “locked up”. Whilst we were trying to shout about how six in 10 deaths in England were of us, I saw how much of the focus was on “getting back to normal”.

    Newspapers held countdowns to Freedom Day. They ran columns deriding mask wearers and vaccine takers, which were contradictory to their waning coverage of why masking and vaccines were still important. They focused on the mental health of non-disabled people and disregarded ours.

    Figures like Andy Burnham were mocked when northern communities were subjected to continuous changes to lockdown rules whilst receiving little support.

    Last year I chaired a panel of media representatives at the Disability Wales Conference. It was absolutely brutal but so lethargic to see them get absolutely ripped into by hurt members of the disabled community who had been let down by their reporting of Covid. 

    Covid-19 Inquiry exposes a disease at the heart of it all

    But it’s not enough to hold just a few people to account. This is a vile disease within the heart of corporate media that puts white, non disabled, straight, and well-off people before anyone else and uses its power to convince the public that anyone raising concerns is a threat to their way of life.

    Whilst governments are being held to account at the Covid-19 Inquiry (though they won’t face any justice), so too must the corporate media who turned the public against disabled people and made it acceptable for us to die – so they could go to pubs.

    Featured image via the Canary

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • Disability rights group says DWP benefits “punitive & inadequate”. That’s an understatement.

    A key coalition of disability rights groups have written to the new Labour Party government. In a letter addressed to prime minister Keir Starmer, the Disability Poverty Campaign Group (DPCG) has detailed a number of critical concerns the new government needs to tackle now it has taken to the helm – with part of the focus on Department for Work and Pensions (DWP) benefits like Universal Credit.

    However, less than two weeks into its term, and it’s already clear that Labour is sidelining disabled and chronically ill people.

    Despite this, the letter is cautious and falls short of taking the new government to task.

    DWP benefits: groups write to the new prime minister

    On Tuesday 16 July the DPCG, led by Disability Rights UK (DR UK) and Inclusion London, penned a letter asking for:

    a positive relationship with the new UK Government, which promised in its manifesto to listen to and work with Disabled people.

    Crucially, the letter put forward a range of “recommendations” for the new Labour government on a range of policy areas that impact disabled people. These included for instance:

    • Introducing a consultation on an energy social tariff to help lift disabled people out of fuel poverty before winter.
    • An extension to the Household Support Fund (HSF)
    • An immediate “debt amnesty” for carers that the DWP has overpaid and are now facing punitive action due to the department’s failures.
    • An increase to carers allowance to “redress the injustice of historically low payment rates.”

    You can read the DPCG’s full demands in its letter to the prime minister here.

    Notably, one of the coalition’s key asks centred round the UK’s “inadequate” DWP benefits and “punitive” welfare system. DPCG wrote that:

    The previous government falsified the reality of this country’s punitive and inadequate welfare system with its claims of “sick-note culture” .

    So firstly, the DPCG is pushing the new Labour government to make a break from Sunak’s smears of chronically ill and disabled people. To date however, new DWP boss Liz Kendall have pandered to this rhetoric, in not so many overt words, with its “Back to Work Plan”.

    During Kendall’s first speech post-election, in one breath she opined that:

    Economic inactivity is holding Britain back – it’s bad for people, it’s bad for businesses, and it’s bad for growth.

    Then, in the other, she referenced the 2.8 million people able to work owing to long-term sickness. Following this, the DPCG letter stated that:

    The Labour government must act to ensure necessary DWP, and welfare reforms are expedited, and informed by disabled expertise, compassion and Labour’s commitment to honour UNCRPD. The previous government’s PIP reforms consultation must be scrapped.

    As the Canary pointed out on 15 July, far from dropping the Tories’ PIP consultation, Labour insiders have indicated the government’s plans to review its responses.

    Meanwhile, Labour hasn’t made any noise about other welfare reforms the previous Conservative government kicked into motion either. This includes plans to reform, and eventually scrap the Work Capability Assessment (WCA) for Universal Credit.

    Of course, the invariable endgame of these changes is to force more chronically ill and disabled people into work. Naturally, this will likely be at great expense to their health.

    Low DWP benefits and real-terms cuts

    Next, the letter calls for the new government to “uplift what are the lowest benefit rates in Europe”.

    Unsurprisingly to anyone stuck in the quagmire that is the UK’s social safety net, but likely a shock to anyone who reads the corporate media, this is indeed the case. As Euronews reported in 2023:

    After two months of joblessness, the UK provides its citizens support worth 17% of their previous in-work income – compared to 90% in Belgium.

    The UK replacement rate is substantially lower than every other northwestern European country, including Luxembourg (85%), Norway (78%), Denmark (78%), Iceland (75%), Switzerland (74%), Sweden (72%), The Netherlands (69%), France (66%), Germany (66%), Finland (57%), Austria (57%) and Ireland (54%).

    Not only this, but the Tories have routinely implemented real-terms cuts to DWP benefits as well. As the cost of living spiralled, the previous government refused to raise benefits in line with inflation. In short, basic daily necessities soared in price, but DWP benefits did not keep pace to match.

    Begging for crumbs

    While the DPCG letter’s recommendation intimated these issues, it did so in a tentative way. The letter is littered with civil language and commendations of the few pledges Labour has made.

    Of course, after fourteen years of successive Tory governments punching down on disabled and chronically ill people, improvements are a low bar. DPCG sets out its mission to:

    dismantle decades of disablist policies and systemic oppression and injustice

    Yet, throughout, it embarks on a long exercise in hedging its demands.

    From “seeking clarification” to “expect to see progress”, this tentative language only feeds into a feeling that the Labour powers-that-be need not prioritise disabled people’s policy needs across its electoral term. Given how the party largely ignored disabled people during the run-up to the election, this is clearly the wrong tone.

    In one notable line, it even states that Labour must increase benefits:

    to ensure Disabled people can afford the essentials.

    Not only does it embody a severe lack of imagination, it begs for crumbs, when it should be shouting vociferously for disabled and chronically ill people’s rights.

    Enough is enough

    In short, while its “recommendations” are a start, these should be whole-hearted, unapologetic demands. After all, disabled and chronically ill people are hardly asking for the Earth. Because what they’re agitating for in reality, is fundamentally just respect for their human rights – like everyone else.

    It shouldn’t need to be said – but that’s absolutely NOT a controversial thing. Policies that make society more accessible and equitable should be par for the course – like DWP benefits that are based on dignity.

    In fact, that can only be the beginning. We deserve more than the basic socioeconomic ingredients to survive. Disabled and chronically ill folks should have every opportunity and support to truly thrive.

    Of course, disabled and chronically ill people know only too well that bowing to the oppressor is not the answer. Therefore, the letter in three words: this ain’t it. In little over a decade, callous Tory DWP policies and reforms have killed tens of thousands of people. Enough is enough.

    It’s why disabled and chronically ill people took to Parliament Square. That is, to tell the Labour government that the Tories’  legacy of harm must end now – including around DWP benefits.

    As the Canary reported, on Thursday 18 July grassroots disability rights groups, campaigners, and allies spent the day celebrating the community. Significantly, they loudly and proudly articulated their demands in collective creative protest.

    And for the next five years they will hold the Labour government’s feet to the fire every step of the way. That is the way forward – not, as the Canary’s Steve Topple previously put it, having “tea and biccies” with the Labour Party, begging for scraps off their table.

    Feature image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • The Week in Ableist Bullsh*t: we got the f*ckers out, now the real fight begins

    Well hello again.

    It’s been a while hasn’t it?

    When we last spoke (well I last spoke at you) we were finally about to be free of the fascist-supporting, forcing disabled people into work and killing trans people Conservative Party government and I know we’re all so glad that definitely happened.

    Lol, we’ll come back to that.

    So long Wet Wi- oh ffs…

    As regular readers of TWIABS will know, my mortal enemy for some time has been the now-former DWP boss Mel Stride 

    For a while now my ultimate dream had been to see Mel Stride the evil bastard formerly in charge of the DWP lose not only his job, but his seat. With this in mind, I made the pledge that I wasn’t going to bed until the Wet Wipe Wept.

    Well, I was kept up a long fucking time wasn’t I?

    Of course, being the little hanger on he is, Stride’s constituency was one of the last to declare. By that time of course much like his constant media appearances, people had grown weary of him so nobody was paying attention by the time it was called. 

    And after a night of ecstasy with many ministers and MPs crying in sports halls, the chief wet wipe had to ruin the mood. But as is often the case with justice, it comes in unsuspecting ways. 

    Instead of easing into the role of media commentator he’d been laying the groundwork for, he has to sit in parliament for another five years – and in the shadow cabinet no less. Sorry Wet Wipe babes, the Strictly glitter ball will have to wait. 

    Wet Wipes crying in sports halls: a megamix

    While the chief wet wipe might’ve managed to cling onto his seat by 61 votes, many many terrible people who’d inflicted cruelty on disabled people did get to have a little huff in a leisure centre at 2am – and it was bloody beautiful.

    Among them was Thérèse Coffey, who in her time in office said the DWP had no duty of care to ensure vulnerable benefits claimants didn’t kill themselves, then flat refused to hand over the data for how many had already done just that. 

    Luckily for that monster though, Rishi had just named her in his honours and she’s going to go ruin lives in the House of Lords.

    Another who I didn’t get to actually see crying in a sports hall (thanks BBC coverage) but emotionally I did is Tom Pursglove. The ex-minister for disabled people who was responsible for stoking hatred against disabled people by among other things wearing a stab vest to benefits raids, bizarrely.

    One of the first to lose their seat was Justin Tomlinson who at the beginning of the pandemic was nowhere to be found and left disabled people to die. 

    A fate worse than death: remaining in the dying Tory Party

    Whilst at first, I delighted in so many bastards losing their seats, I’ve come to realise that the only thing worse than being part of the mass Tory casualties is being one of the survivors: part of the most dead Tory Party ever who still has to go to PMQs or if you’re even unluckier- be in the shadow cabinet.

    As previously mentioned, the Wet Wipe (somehow) kept his seat and joining him are the other two most hateful ex-DWP bosses.

    Esther McVey who is responsible for god knows how many deaths due to Universal Credit annoyingly is still an MP. This is also the evil cunt behind the two-child benefit cap clause that means you can receive benefits only if the third is a product of rape – tarring your child with that forever.

    Joining her is someone who is responsible for some of the cruellest DWP decisions of the lot: Iain Duncan Smith. This death merchant’s victory is only thanks to the Labour Party, who deselected candidate Faiza Shaheen after she liked BDS-and Corbyn-supporting tweets. The new mum said she faced racism and harassment from within the party and decided to run as an independent.

    Labour’s stubbornness around this split the left vote and meant IDS won. The blood is on their hands now.

    So what now?

    Like many disabled people, I’ve been (rightly as far as I see it) cynical that a Labour government would be any different for disabled people. 

    I’m not ashamed to admit that after 14 years of Tory cruelty, I felt a spark of hope on 5 July for what Labour would bring – but that spark was quickly snuffed out when Labour opened their mouths.

    More of the same from Labour

    Despite it being obvious that they were going to make Liz Kendall the secretary for the DWP, it still felt galling that a woman who focuses solely on work. She’s so far pledged to reform job centres and “help” disabled people. 

    She’s also, as the Canary’s Hannah Sharland reported, been completely silent on the proposed PIP reforms, coincidentally while the consultation is due to run out on 22 July. There are reports however though that instead of throwing out the reform plans, Kendall will be taking the responses into consideration. Which is why it’s vital you fill it in if you can. 

    Where’s our minister?

    The minister for disabled people position felt like it was destined to go to Vicky Foxcroft, who’s done the shadow role for four years – so it was a shock when she was given Whip. It feels too great a coincidence that someone who has been instrumental in opposing welfare reforms now can’t have an opinion on them or join in debates.

    Instead of Vicky, we got an over a week’s wait to find out who our minister for disabled people would be – which again feels cruel that she couldn’t address considering she’s pulled the government up twice in recent years for failing to give her an opposite number.

    Finally, after spaffing on about getting disabled people back into work in a plan that looks suspiciously like the Tories Back to Work one, Liz Kendall appointed Stephen Timms – but not as minister for disabled people.

    No, Timms’s new role is minister for disability and social security, which, whilst it takes away the work aspect that was in the ministerial title, instead lumps us in with benefits. Whilst this is hopefully a good thing and means benefits reform is coming, if it’s not it will make it easier for benefit scrounger rhetoric to take hold. 

    For what it’s worth though, Timms has an excellent record on disability rights, having chaired committees that stuck up for us and taken the former government to task on the cover-up of claimants deaths and cruel benefits reforms – but it must be noted that he also opposes gay marriage. 

    Labour needs to take us seriously or be prepared to fight

    There’s so much Labour needs to do to prove themselves to disabled people, from benefit reforms to social housing to taking the UNCRPD seriously. But to do all of that they need to actually engage with us.

    At the moment Labour’s strategy seems to be to ignore us and hope we’ll go away, but that’s the opposite of what they should be doing. Labour needs to compassionately and earnestly work with disabled people, or be prepared to have us fight against them. 

    Featured image via the Canary

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • The corporate media is using DWP claimants for clicks over Universal Credit

    Corporate media outlet BirminghamLive has published another misleading article on the Department for Work and Pensions (DWP) Universal Credit. In particular, the site has played into benefit claimant concerns as the Labour Party take to the helm as the new UK government.

    Its trash article offers little that it claims in its obtuse headline. However, this isn’t the outlets aim. In reality, it’s a clickbait ploy to bolster readership and revenue. Unfortunately, benefit claimants are the butt of this opportunistic churnalism. Though obviously, it’s not anything we haven’t seen before, countless times.

    DWP Universal Credit ‘changes’ under Labour a red herring

    The Canary’s Rachel Charlton-Dailey previously referred to BirminghamLive as  “vile” and part of the “cesspit media” – and did so for good reason. Notably, the site has stolen her content on not one, but two separate occasions. This included Charlton-Dailey’s personal account about the DWP screwing her over on her Personal Independence Payment (PIP).

    The outlet shamelessly used large swathes of her article as quotes, presumably to get around plagiarism accusations. Appallingly, it did so without permission, and practically lifted her work for its piece. Given this, she forced BirminghamLive to take it down.

    However, her experience is characteristic of its broader shoddy journalistic standards. Specifically, BirminghamLive is courting readership with clickbait content – though this is of course nothing new. Essentially, DWP clickbait is the bread and butter of outlets like Birmingham Live. It peddles in fear-mongering stories, with headlines designed to stoke alarm to people claiming benefits.

    One of the latest examples of this is its article titled:

    DWP makes first change to Universal Credit under Labour government

    In this instance, the headline misleadingly implies the article will reveal a change that the Labour government has instigated on Universal Credit. Of course, it’s precisely written so ambiguously to get people on social media to click and read.

    Labour’s manifesto vaguely promised to “review” DWP Universal Credit, but gave no firm details on what this would mean in practice. So readers might naturally infer that BirminghamLive’s article could have something to do with this.

    Instead though, the article details how the DWP is shifting the Universal Credit payment date due to the upcoming bank holiday. True: it’s happening with the new Labour government in power. False: there’s not actually any specific link to the two events. In other words, it’s using the old correlation conflated with causation fallacy to pump out a punchy-looking, but specious article.

    Weaponising DWP Universal Credit claimant distress

    What’s more, the combination of “DWP” “Universal Credit”, and “Labour government” is a search engine’s gold dust. Effectively, in combination, these buzzwords maximise the chances of search engines and news aggregators picking them up and pushing them out. This is called search engine optimisation (SEO) which all news outlets need to utilise to ensure a steady stream of traffic – readers – to their articles and websites.

    In itself, there’s obviously nothing wrong with this. The Canary has optimised SEO in this article. However, again, the BirminghamLive headline is sneakily deceptive.

    Naturally, it also weaponises claimants’ distress from the uncertainty of the new Labour government’s agenda on social security. In the lead up to the election, the party was evasive about its plans for Universal Credit.

    Since the election, the new Starmer-led government has largely stayed silent over the consultation on Sunak’s PIP voucher vanity project. As the Mirror reported, Labour insiders have even indicated that the Labour government will mull over the responses. It has also yet to pledge that it will ditch the Tories’ Work Capability Assessment (WCA) plans, and other harmful benefit reforms.

    All this equivocating has come amid new DWP Universal Credit boss Liz Kendall’s dogwhistle rhetoric over disabled and chronically ill people. As the Canary reported, she couched the number of economically inactive sick people in a speech about the government’s “Back to Work Plan”.

    Of course, it seemed obvious what this implied and where it could invariably lead. That is, that Labour will push disabled and chronically ill people into work at detriment to their health and wellbeing. After a bitter, brutal fourteen years of Tories punching down on claimants with harsh sanctions and reforms, Kendall’s speech raised these glaring red flags.

    It was therefore in the context of all this that BirminghamLive chose to publish the piece with its janky headline.

    DWP and its corporate media mouthpieces

    But then, this is from an outlet that routinely titles stories to demonise claimants too. The lapdog churnalists at BirminghamLive regularly spew out sensationalistic spin on people claiming DWP Universal Credit and other benefits.

    For instance, the Canary previously highlighted its torrid tirade on so-called PIP benefit fraud. Spoiler: there barely were any, and it’s as far from a systemic problem as you can get.

    The point is however, that these articles purposely feed into the vile rightwing narratives inciting moral panic and scapegoating poor and disabled people.

    Of course, none of this is perhaps any wonder given the outlet’s parent company either. Media conglomerate Reach Plc owns BirminghamLive among its enormous portfolio of pseudo-local media sites. Reach also operates a number of national media sites including the Express, the Mirror, the Daily Star, and the Daily Record.

    Who owns Reach? Largely, that would be a shareholder who’s who of major asset management companies and investment banks. Among these are big players in the financial sector such as Hargreaves Lansdown, BlackRock, and JP Morgan. Both Labour and the Tories have big backers from the City.

    What’s more, the degrees of separation between Reach and the DWP doesn’t instill confidence either. Revelations and connections in recent years have unveiled the cosy relationship the client media outlet has built with the department.

    In 2019, a leaked memo showed the DWP planning to employ Reach publications to publish advertorials for its plans. These are paid articles that news sites print in the style of editorials. It likely also churns out press releases planting these narratives from the DWP itself, although this isn’t possible to verify.

    On top of this, people have previously pointed out that a now former senior director of Reach – Helen Stevenson – had worked for the DWP as a non-executive director.

    So, far from publishing journalistic content that informs and uplifts the voices of marginalised communities, BirminghamLive is serving the interests of its capitalist shareholders. And as ever with shill corporate media outlets in bed with the rich and powerful, it’s doing so at poor and disabled people’s expense.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Screaming, freezing, struggling to breathe: confronting Queensland watch house footage exposes anguish of children locked in isolation cells

    Exclusive: Cache of videos seen by Guardian Australia and SBS The Feed lays bare distressing treatment of teenagers – many of them disabled – in police custody

    A girl punches herself in the face, strips naked and urinates on the floor of an isolation cell; a boy wakes in the night and tells officers: “I can’t breathe.”

    Children scream in distress at being placed in a “freezing” isolation cell, known as “the box”.

    Sign up for Guardian Australia’s free morning and afternoon email newsletters for your daily news roundup

    Continue reading…

    This post was originally published on Human rights | The Guardian.