Category: Disability

  • Keir Starmer is headed for a major rebellion from his own MPs, as shown in a letter signed by more than 40 MPs. Labour’s plans for Department for Work and Pensions (DWP) disability benefit cuts have come in for severe criticism from disabled people, charities, and other organisations.

    As the Canary’s Hannah Sharland reported:

    The paper included a suite of regressive reforms to make it harder for people to claim disability benefits like PIP. As expected, the changes it’s proposing will target certain claimants in particular, namely young, neurodivergent, learning disabled, and those with mental health disorders.

    Moreover, disabled people who need help with things like cutting up food, supervision, prompting, or assistance to wash, dress, or monitor their health condition, will no longer be eligible.

    Certain MPs have spoken out over the proposed DWP reforms. Now, however, that dissent appears to be more organised in a worrying sign for Starmer.

    Labour’s cross-party rebellion

    As the Guardian reported:

    The letter from parliamentarians spanning the new intake and veterans, and from the left and right of the party, sets Keir Starmer up for the biggest rebellion of his premiership when the House of Commons votes on the measures next month.

    The letter sets out how the proposals have created “a huge amount of anxiety and concern” for disabled people. According to the DWP, the proposals would hit 700,000 families who are already in poverty. Even so, Starmer has persisted with the plans in an attempt to deliver a saving of £5 billion.

    However, as Scottish finance secretary Shona Robison said, the government would be:

    balancing books on backs of disabled people.

    The letter continued that:

    Whilst the government may have correctly diagnosed the problem of a broken benefits system and a lack of job opportunities for those who are able to work, they have come up with the wrong medicine. Cuts don’t create jobs, they just cause more hardship.

    It’s unlikely that a broken DWP benefits system is the problem, when just 10% of individuals hold more than half the wealth in Britain. But, it is undeniable that cuts don’t create jobs, or for that matter, savings. Labour’s proposals may wish to pretend that cutting benefits will create savings. However, analysis from Katie Schmuecker at the Joseph Rowntree Foundation actually found that the proposals:

    will drive more people to the doors of foodbanks and more children deeper into poverty – the opposite of what the Labour manifesto pledged to do.

    ‘Impossible to support’

    The letter from Labour MPs calls on Starmer to halt proceedings and change direction over the DWP:

    We also need to invest in creating job opportunities and ensure the law is robust enough to provide employment protections against discrimination. Without a change in direction, the green paper will be impossible to support.

    A list of the signatories of the letter showed MPs from across the left, centre, and right of the party:

    Labour veteran Diane Abbott warned that the proposed DWP cuts were a big reason why voters were turned off:

    Richard Burgon shared calls for a tax on the wealthiest, rather than the poorest:

    Crunch time over DWP cuts

    Meanwhile, YouGov’s latest poll shows that only 15% of adults surveyed approve of Labour’s government. 18% said they didn’t know, a whopping 67% said they disapprove of the government. Whilst Starmer has largely suppressed dissent from within the party – especially over the DWP cuts – it’s clearly going to be more difficult for him to continue to do so.

    This is the least these Labour MPs can do as disabled people face cuts that will leave many of us struggling to survive. However, this government have attacked the rights of the most vulnerable people in society so much that the news of this letter may well be met with justified surprise.

    Featured image via the Canary

    By Maryam Jameela

    This post was originally published on Canary.

  • The organiser of a petition to oust Labour MP Stephen Timms as the minister for disabled people has spoken out about why he is unfit to represent chronically ill and disabled communities after a run-in with the dual social security minister himself. In particular, long-time myalgic encephalomyelitis (ME) campaigner Sally Callow made the personal observation that Timms’ language was not “fitting” for his role. This was after attending a meeting in which the Department for Work and Pensions (DWP) minister was present.

    In short, the encounter with Timms made clear to her precisely why he’s not the champion that chronically ill and disabled people need, or have asked for. If Timms’ recent outrageous comments over Personal Independence Payment (PIP) weren’t enough, now Callow – who IS a champion for the community – has spelled out why people need to join her in demanding a new and separate minister for disabled people.

    Stephen Timms petition: a separate minister for disabled people needed

    Callow is founder of campaign social enterprise ME Foggy Dog and accredited ME training organisation the Stripy Lightbulb CIC. A prolific campaigner, through her organisations, Callow has been advocating for the ME community for more than a decade.

    Standing up for people living with ME, she has publicly spoken out against the DWP’s suite of callous welfare cuts.

    So now, she has now set up a petition that throws a spotlight on DWP minister Stephen Timms’ role in pushing these cuts.

    This calls for:

    the removal of Stephen Timms MP from his role as Minister for Social Security and Disability and demand the creation of a dedicated Minister for Disabled People role.

    As the petition aptly sets out, the government outlines that a minister for disabled people should:

    represent the interests of disabled people, and champion disability inclusion and accessibility across each government department.

    Of course, this is exactly what the DWP minister has NOT been doing.

    Cruel and obtuse answers around the DWP benefit cuts

    In April, he openly undermined any pretense he is acting in the interests of chronically ill and disabled people.

    Specifically, Timms responded with a particularly callous reply to a written question from MP for Leeds East Richard Burgon. This concerned the regressive PIP reforms. In particular, the government is increasing the number of points a person will need to score in their DWP PIP assessment to access the daily living component of the benefit. In effect, this will deny PIP to many disabled people who need help with things like cutting up food, supervision, prompting, or assistance to wash, dress, or monitor their health condition. As the Canary’s Maryam Jameela wrote, Timms’ response boiled down to him saying:

    that of the various needs Burgon listed in his question, it is the Labour party’s belief that they could be considered “low-level functional needs.” That includes cutting up food, washing your hair and body, and using the toilet.

    This was a cruel, and arguably obtuse answer. Given Timms is meant to advocate for disabled people in his role, his ignorant response is all the more appalling. What it demonstrated irrefutably is that the DWP minister either doesn’t understand the needs and lives of chronically ill and disabled people, or he simply doesn’t care.

    Considering the minister previously lambasted Conservative governments over similar such cuts, it’s likely this is the latter. His role as minister for disabled people has been subsumed by his own interests in maintaining a position in Starmer’s Cabinet.

    Since Callow launched it in mid-April, the petition has taken off, garnering more than 7,500 signatures.

    A ‘DWP spokesperson rather than the empathetic representative of disabled people’

    Now, Callow has seen firsthand how this glaring conflict of interest operates in practice. And she has argued it only cements the case for her petition further.

    Through the Stripy Lightbulb CIC, Callow attended a meeting with other organisations on Tuesday 6 May. The Minister of State for Social Security and Disability Stephen Timms briefly joined to field questions about the government’s Green Paper.

    However, Callow said after the meeting that Timms’ answers to the questions throughout his showed how he wasn’t there in his capacity as minister for disabled people. Instead, she felt he had prioritised his role as a spokesperson for the DWP:

    To put simply, Timms was being a good government lapdog in classic politician’s PR-speak. But he wasn’t being a good minister for disabled people.

    Diluting the minister for disabled people role

    Ultimately, the case the petition makes is one that was clear to disability rights campaigners from the start.

    Attaching the role to the DWP social security minister was always going to be a disaster. In effect, it dilutes the remit, and renders it ostensibly a toothless position. The Canary’s own Rachel Charlton-Dailey was among those voicing this concern at his dual appointment:

    Moreover, as the petition vitally notes:

    Disability issues permeate various government sectors, including health, the DWP, and social services. A minister with exclusive focus and authority is crucial to drive the necessary transformational changes.

    As such, it argues that:

    The absence of a Minister for Disabled People undermines the representation and prioritisation of disability issues across all government departments.

    The petition stipulates that Timms can remain the social security minister. However, he is clearly no champion for inclusion and accessibility for disabled people.

    Not a single representative for chronically ill and disabled people in government or the DWP

    Callow told the Canary:

    The conflict of interest with Stephen Timms MP’s dual role has been made glaringly obvious in recent days when attending disability organisation meetings relating to proposed welfare cuts. He has a dual role but the language he used was entirely leaning towards his DWP ‘social security’ position. He parroted DWP official rhetoric as if he was oblivious that all of those organisations were actively fighting against the proposed welfare cuts.

    Unfortunately, as a ME/disability rights campaigner, I do not feel there is a single person sitting in the government right now that I could comfortably and confidently contact in the knowledge they would support and represent my communities (ME and disabled).

    Not a single minister is in a position to offer dedicated representation and support to 16 million disabled people. We need real allies, not ministers who parrot government propaganda. We deserve better than this.

    Callow is right. As it stands, chronically ill and disabled people have no official representative in the government or DWP fighting in their corner.

    That’s shameful at any time, but right as Labour rips into our communities rights? That should be a lasting stain on the conscience of this ableist government. However, it’s also not any surprise from the neoliberal Starmerites who have refused to enshrine the UN rights of disabled people into law.

    Where accountability is concerned, this Labour government has shown time and again that its focus is to evade it, rather than to listen to the valid fears of chronically ill and disabled communities.

    You can sign the petition demanding a dedicated minister for disabled people here.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Monday 12 May is ME Awareness Day – for myalgic encephalomyelitis (ME/CFS). Historically, it has been marked with patients sharing stories online, and campaigning for improved treatment and research. However, this year one group is taking the fight for patients directly to Westminster, and the Canary is proudly supporting it. Us and the group want to show that in decades, nothing has changed for people with ME – thanks to government, the medical profession, and not least the media.

    #StillTheSaME

    On Monday 12 May, the Canary and Not Recovered UK will be at Westminster. We will be protesting outside both the Department of Health and Social Care (DHSC) and parliament, starting at 12pm at Old Palace Yard (opposite parliament) and lasting until around 2pm. It is over what Not Recovered UK has branded things being #StillTheSaME.

    We’ll be there with banners and placards like this:

    ME Awareness Day ME/CFS

    However, the most important part of the protest is for people house-or bed-bound to be able to get involved online. So, we’ll be livestreaming what we’re doing onto our X (Twitter) account. And, we want people with ME, their families, and advocates to get involved too.

    The campaign is centred around newspaper headlines from decades ago; ones like this:

    In 2025, ‘top experts’ are still probing the disease – yet patients lives are no better. So, this is why Not Recovered UK is using #StillTheSaME – because so little has changed. And the group and the Canary will be asking politicians why.

    If you’re following the protest at home, we want you to tag your MP and ask them why things are #StillTheSaME. We also want you to make some noise about why nothing has changed for people with ME in so many decades. You can tell your stories if you wish. Ultimately, we want to get both #MEAwarenessDay and #StillTheSaME trending. Not Recovered UK will be providing a resource pack with images and comments for people to be able to easily put together social media posts.

    Where’s the funding?

    Part of the problem is research funding. For example, a 2016 report highlighted that ME research represented approximately 0.02% of all active awards from major UK funding agencies. Additionally, the research spend per patient for ME/CFS was just £40 between 2006 and 2015, compared to £320 for rheumatoid arthritis and £800 for multiple sclerosis.

    So, Not Recovered UK and the Canary will be trying to speak to politician and civil servants – particularly from the DHSC – to ask why the new ME Delivery Plan contains no money for research funding:

    ME/CFS

    But overall, ME is a controversial disease – if you believe what you read in some of the media and listen to some medical professionals – although it really shouldn’t be.

    ME/CFS: complex, or made complicated?

    Myalgic encephalomyelitis (ME/CFS) is a complex and debilitating chronic illness characterised by extreme fatigue that is not relieved by rest and is worsened by physical or mental exertion. The exact cause of ME remains unknown, and it is believed to result from a combination of factors, including infections, immune system abnormalities, hormonal imbalances, and genetic predisposition.

    A hallmark of ME is post-exertional malaise (PEM), where even minor physical or cognitive activity leads to a dramatic worsening of symptoms, often lasting days or longer and all too often with a permanent worsening for the patient.

    Other major symptoms include profound fatigue, unrefreshing sleep, cognitive impairments (commonly described as “brain fog”), orthostatic intolerance (difficulty standing upright, often resulting in lightheadedness or fainting), muscle and joint pain, severe gastrological disruption, and sore throat or tender lymph nodes without clear infection. Symptoms vary in severity and can fluctuate unpredictably.

    The illness significantly impairs quality of life, with many patients unable to maintain employment, education, or social activities. In severe cases, individuals may become housebound or bedbound. At its worst, ME has killed people.

    Despite decades of research, there is no definitive cure for ME, and treatment focuses primarily on symptom management. Common strategies include pacing (to avoid overexertion), medications for pain and sleep disturbances, and supportive therapies such as cognitive behavioral therapy (CBT) or graded exercise therapy (GET)—though the latter is controversial and rejected by patients and doctors due to evidence that it worsens symptoms.

    Patients and advocates often express frustration and distress at the lack of progress in understanding or treating ME. Several reasons contribute to this perception:

    • Historical stigma and disbelief: ME has long been dismissed as psychosomatic, leading to underfunding and a lack of scientific inquiry.
    • Biological complexity: The illness affects multiple systems—neurological, immune, metabolic—making it hard to study and diagnose.
    • Diagnostic challenges: There is no single biomarker for ME, and diagnosis relies on clinical criteria, which can vary.
    • Limited funding: Research into ME has historically received significantly less funding than diseases of similar prevalence and impact.

    The same old trickery

    Spoiler alert: the entire section above was written by AI. We did this to make a point: that a bot can write something more robust and accurate on ME/CFS than a lot of the media and some medical professionals can.

    A good example of this is a Mirror article from 1998 – where notorious quackery-peddler ‘Sir’ Simon Wessely was about to release a new book. It and him were seemingly claiming that exercise/activity could cure ME – with the Mirror peddling it unquestioningly:

    Of course, this was as much of a lie then as it is now – yet some medical professionals still push this. Moreover, the corporate media is a fair-weather friend when it comes to ME, too:

    And of course, this applies to chronically ill and disabled people more broadly. For example, the Times is up for an award for its coverage of ME – largely due to the death of Maeve Boothby O’Neill, journalist Sean O’Neill’s daughter. Sadly, the Times would throw chronically ill and disabled people under the bus for anything else – unless they’re middle class and don’t claim benefits (obviously):

    But ultimately, the corporate media is just a mirror on the real problem: a system that refuses to give people with ME (and chronically ill and disabled people more broadly) the dignity and respect they deserve.

    ME/CFS: cruel

    So, Not Recovered UK and the Canary will be outside the DHSC and parliament asking why nothing has changed in decades – and what the UK government is going to do about it.

    We want you to join us in person if you can. You can DM the Canary or Not Recovered on X for details – or just show up at Old Palace Yard at 12pm. Alternatively, get involved on X from 12pm with the livestream with a view to getting the hashtags trending.

    The cruel treatment of people with ME, and the terrible state governments, medical professionals, and the media have left them to live in, is utterly unacceptable and always has been. It should not be #StillTheSaME – and its time to remind the world of this.

    Featured image and additional images via Not Recovered UK

    By Steve Topple

    This post was originally published on Canary.

  • New data disclosed by the Department of Work and Pensions (DWP) has shown that there were hundreds of data security incidents across Jobcentres in 2024, affecting an untold number of claimants. The new information has been released just as the DWP caused another major data breach – this time, involving dozens of disabled people’s personal emails.

    DWP: breaching data for the online Green Paper consultation

    Currently, the DWP is doing online consultations on the Green Paper it recently released. This is about its planned cuts to Universal Credit, and changes and cuts to Personal Independence Payment (PIP). Understandably, countless chronically ill and disabled people had signed up for the online meeting. However, last Thursday as one participant told the Canary:

    DWP are doing online consultations regarding the green paper. Me and other people signed up to one on Eventbrite. The online consultation is happening on 6 May.

    This afternoon we received an email with the zoom joining details.

    All of our email addresses were included in the “to” section.

    It is also worth noting that I cancelled my “ticket” to this event a couple of weeks ago and confirmed I had cancelled my attendance to the DWP via email. So, I should not have even been on this email list.

    I am disabled. This major breach is linking me to that protected characteristic.

    The email address used is my main one, on a domain that I own.

    I now feel that my identity as a disabled person has now been shared without my consent.

    As Benefits and Work noted, “an attachment with the email even set out which of the DWP staff were ‘required’ participants, which were ‘optional’ and detailed which section of the DWP they work in, such as, corporate support and development, occupational psychology, private pensions, labour market directorate, disability and health, customer experience”.

    A shambles

    Another participant told the Canary:

    I discovered that the DWP shared our personal information without consent by sending out a blanket invitation to all involved. Everyone in attendance could see each other’s personal information. What shocked me is that DWP has responded by labelling it as a technical difficulty without understanding or taking ownership around the seriousness of this breach. Understandably so, there were attendees emailing collectively to raise their concern as well spreading awareness about ICO if anyone wants to formally address it.

    As Benefits and Work noted, the DWP response said:

    Apologies for the Teams invite that was shared, there was a technical difficulty. The previously scheduled Teams meeting has now been cancelled, and a new meeting invitation will be shared with you shortly.

    In the meantime, if you would like us to use a different email address for the updated invitation, please reply to this email by 02/05/2025.

    That is, the DWP failed to even acknowledge it had broken the law. However, when it comes to the department this is just the tip of the iceberg.

    The tip of the iceberg

    Compensation experts Data Breach Claims UK learned through a Freedom of Information request that 238 Jobcentres experienced at least one breach between November 2023 and January 2025.

    There were also 261 ‘postal security incidents’, where documents containing personal data were sent to the wrong address and opened by an unauthorised person.

    The DWP was reprimanded by the ICO in 2022 after a failure to redact sensitive information by its Child Maintenance Appeals service led to 16 people’s personal data being sent to ‘inappropriate’ third parties. It was reported that among the recipients of that data was an ex-partner with a history of domestic abuse, an error for which the DWP apologised after its ICO rebuke.

    The department was bullish in defending their mail security record, telling Data Breach Claims UK that the:

    DWP issues over 80,000,000 mail notifications per annum and the number of recorded Postal Security Incidents recorded equates to 0.00027%.

    DWP data breaches are no small matter, says expert

    A data breach is defined by information security watchdog the ICO as a “breach of security leading to the accidental or unlawful destruction, loss, alteration, unauthorised disclosure of, or access to, personal data”.

    DWP claimants are expected to share sensitive information when using the service, including names, addresses, National Insurance numbers, job histories and bank details, plus medical information in some cases.

    A breach of said data can have a catastrophic effect, such as one case of a Jobcentre Plus data breach from 2014 where the impacted person was forced to move across the country.

    “In this current climate, claimants already have more than enough to worry about without a mistake causing their personal data to become public,” said Data Breach Claims UK specialist Bethan Hakesley:

    Even one data breach is too many, especially if it causes a person significant stress. If personal data gets in the wrong hands, it can have a devastating impact.

    We’ve supported many people who have had their lives turned upside down by a simple error with serious consequences. If someone suffers mental harm or financial damage because of a personal data breach, they’re well within their rights to look into claiming compensation.

    London and East Midlands centres post most data breach incidents

    The DWP counted 369 data breaches across its Jobcentres through 2024, spread across 218 locations.

    Letter mishaps affect over 250 claimants

    The DWP said that there were 261 ‘postal security incidents’ between November 2023 and January 2025. Such incidents involve letters being sent to the wrong address and their contents–including an individual’s personal data–being seen by the wrong person.

    This happened most often in Coventry, where 30 incidents were recorded. A postal mishap was more than twice as likely in Coventry than in the place affected second-most often (Torquay, 14 incidents).

    Birkenhead (12), Makerfield (11) and Norwich (10) all had postal incidents in the double-digits.

    103 of the incidents affected the personal data of people on the DWP’s Work & Health programme, with the north east (27 errors) and southern England (26) the most affected regions.

    The DWP says…

    The Canary contacted the DWP for a response over the data breach relating to the Green Paper. It told us:

    As part of our Plan for Change, we are seeking views on the approaches we should consider creating a sustainable welfare system that genuinely supports sick and disabled people into work.

    We take our responsibility to protect data very seriously and apologise to those impacted by this isolated incident.

    However, given the information Data Breach Claims UK has discovered, it is far from an isolated incident. When the DWP cannot be bothered to even handle chronically ill and disabled people’s personal data properly, how can they trust it to deal with their actual claims?

    As one claimant told the Canary:

    It is violating my privacy.

    It is leaving me open to scams, hacks, and abuse.

    It makes me feel more vulnerable than I already feel as a disabled woman.

    It removes any trust I had in the DWP that this consultation will be handled professionally and with dignity.

    History has repeatedly proven the DWP is not fit for purpose, and exists purely to work against chronically ill and disabled people. These latest revelations just cement that notion further.

    Data Breach Claims UK is a service dedicated to offering guidance and support to people who have been emotionally or financially affected by a personal data breach.

    Its phone and online service is available 24/7 and provides a free compensation claim assessment.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • Possible internal moves by the Department for Work and Pensions (DWP) has only exposed once more the contempt that this Labour Party government has for chronically ill and disabled people. Crucially, more chaos from the DWP – this time over purported “operational changes” to its flagship Access to Work scheme – is showing how the government’s cuts to chronically ill and disabled people’s benefits has little to do with supporting them into work, and everything to do with eliminating government expenditures.

    Significantly however, the DWP didn’t put forward these changes publicly. It’s only thanks to one disability consultant and Access to Work adviser whistleblowing the unexpected updates that we even know this might be happening. So, the DWP is seemingly attempting to sneak this through without public scrutiny. And of course, it’s doing so all as it claims its broader programme of welfare cuts is to support chronically ill and disabled people into work.

    Now, the whole affair is also turning into another DWP shambles. This is because, without explanation, the department appears to have put a pin in these plans. But notably, this was only after the whistleblower raised the alarm on LinkedIn, and a poster shared them further on X.

    Access to Work: DWP covert changes afoot

    As the name suggests, the scheme provides financial support for disabled people in the workplace, or trying to enter it. In effect, it offers a grant for things like specialist equipment, assistive software, and support workers. It also provides financial help to cover the costs of travel, vehicle adaptations, and other access changes to the workplace environment.

    Currently though, the scheme has major backlogs, and is enormously failing to support disabled people when they’re already in work. In April, a disabled campaigner obtained damning Access to Work figures. These revealed the continued failure of the new Labour government to address these soaring backlogs. Notably, an Freedom of Information (FOI) revealed that waiting times had actually shot up exponentially since Labour took power. Specifically, between July 2024, to the end of February, the average processing time for applications to Access to Work increased from 55.3 days, to 84.6 days.

    On top of this, the onerous and bureaucratic assessment process is itself a barrier to applicants as well.

    Now however, the DWP looks to be taking steps that will only exacerbate these problems. And it’s doing so largely behind closed doors.

    Disability consultant and Access to Work adviser Alice Hastie posted about the “upcoming changes” to Access to Work’s “operational delivery” on her LinkedIn.

    The DWP had sent the information to her in a private email during the week commencing 28 April. According to the communication, the changes the DWP laid out would go live Tuesday 6 May.

    Specifically, Hastie highlighted that these included:

    1. Special Aides and Equipment – more pushback onto employers
    2. Hard limits on Support Worker hourly rates
    3. Stricter rules and criteria for awarding Job Aide Support Workers
    4. Removing flexibility to allow small increases in support without the need to raise a Change of Circumstance.

    Notably, Hastie explained that:

    These changes will affect all decisions made after this date, whether they are on new applications, reconsiderations, renewals or changes of circumstances.

    Hastie raised the alarm on this because she had a number of “major concerns”.

    Reasonable adjustments become ‘standard business items’

    For a start, Hastie disclosed a “clarified” list of reasonable adjustments the DWP Access to Work scheme would categorically no longer fund. These included ergonomic items like chairs, desks, keyboards, and mice. Alongside these, it listed various software, reading support devices, and physical supports such as arm rests, back, and wrist supports.

    In essence, the DWP communication suggested it would consider these ‘standard business items’. That is, reasonable adjustments that employers should fund themselves for their employees. However, Hastie pointed out a number of issues with this.

    To begin with, Hastie highlighted that there is “no scaling” between self-employed and corporations with large turnovers. In other words, while a multimillion pound company could afford to fund these items, small businesses and self-employed individuals won’t necessarily have the finances to do so.

    What’s more, it makes the assumption that employees have recourse to hold employers to account for making these reasonable adjustments. Hastie explained that in here experience, in practice, this is rarely the case. She wrote that there was a lack of support:

    for employees to get their employers to provide Reasonable Adjustments, buy ‘standard business items’ or employ Support Workers. This is already a problem – I have a client who has been trying to get a fully funded support worker access to their place of employment for over 6 months now with no success. When Access to Work rejects a request, the employee has very little power to hold their employer to account to do the things that Access to Work has assumed they will do. I’ve seen this over and over again with clients. I would like to see a dedicated set of liaison officers within Access to Work to provide backup to employees and level the power dynamic. So if AtW rejects a claim because all the items needed are ‘standard business items’ or Reasonable Adjustments – the employee knows that AtW will help them get that support out of their employer.

    Reducing support in multiple areas

    Hastie also raised problems with other Access to Work changes the DWP appears to be mooting. She explained how they are restricting what would constitute as ‘replacement’ versus ‘enablement’ for disabled employees. Ultimately, this would dictate whether the DWP funds support workers and job aides.

    Another notable change was that the guidance seemed to downgrade support for certain groups. In particular, Hastie noted the impact on neurodivergent individuals, people with mental health conditions, and executive functioning issues. Specifically, she described how instead of giving job aides this support role, it would now instead be funded as a job coach support or as “Coping Strategies Coaching”. Notably, the job coach would be a temporary support. In other words, it seems to mean entirely withdrawing long-term funding for job aides for these disabled demographics.

    There were other changes around payments too. Support workers hourly rates would have a hard cap. Job aide funding would be tied to local job portal rates. If costs increase for certain supports the AtW scheme would no longer increase to match this during an award period. For instance, this might include more expensive travel fares.

    Hastie underscored that the DWP changes seemed to lack consideration for the impact on self-employed people in particular. And, as she noted:

    The disabled self-employed people I work with are mainly self-employed as their last attempt at staying in employment. They weren’t able to stay in traditional employment, due to high needs and unsupportive employers and they don’t want to give up and claim benefits. They don’t usually have much in the way of capital to buy items to support their disabilities and their turnover is often too small to do it that way either.

    And, in the context of the pitiable number of ‘disability confident’ jobs on offer as it is, this should be only too evident:

    Access to Work changes: ready to roll-out..? Not quite

    So, instead of addressing the Access to Work scheme’s multiple issues, the DWP appears to be attempting to make sudden changes that will only entrench them further for chronically ill and disabled people attempting to utilise the scheme.

    But, to make matters worse, it’s now unclear when the department is going to roll these changes out anyway. This is because the DWP has purportedly paused this. It will not be implementing these changes on 6 May after all.

    The Canary’s Rachel Charlton-Dailey established this in conversation with Hastie over Linkedin. In particular, she replied that:

    I’ve just had an update to say staff have been told not to go ahead as planned. I do not know what that means!

    It appears the DWP may have halted the plans in response to the social media pushback. Overall though, it speaks to more of the DWP’s glaring incompetency and a clear culture of contempt for chronically ill and disabled communities.

    While it’s not proceeding with this – for now – it’s evident that it’s attempting to covertly shift the goal-posts to make it harder for chronically ill and disabled people to access support. Once again, it’s trying to make unilateral changes without public input, consultation, or impact assessment.

    Labour doing what it does best: punching down on disabled people

    Of course, it would hardly be surprising if this is the Labour-led DWP’s response to the Access to Work spiralling backlogs and the perceived soaring costs of the scheme. In short, restricting what chronically ill and disabled people can get support for on the scheme would be one way to drive down both. However, it will naturally invariably mean denying them grants for aids, equipment, and support vital to reducing and removing barriers into, and within workplaces.

    In this sense, the changes seem to suggest that the DWP is less concerned with making the scheme more accessible and effective, than it is with quick fixes to its headline backlog figures.

    Arguably, it fits right in with Labour’s manoeuvres to scapegoat neurodivergent people and those living with mental health conditions. As the Canary has consistently documented, the right-wing corporate media has been actively laying the groundwork for this.

    In January, a number of articles in right-wing outlets like the Telegraph, and the Daily Mail, seized on the ‘sickfluencers’ purportedly abusing the scheme. As we previously highlighted, these:

    homed in on the fact it “can hand claimants nearly £70,000 a year”. It juxtaposed this beside the “spiralling costs” of an increasing claim rate to the Treasury. In other words, the ‘economic burden’ narrative is pretty palpable in this.

    The DWP’s moves to reduce the scheme would therefore track in this fiscal savings framing.

    Another fudge and more underhandedness from the DWP

    Yet, none of this should be surprising. The department itself is hardly the champion of access and disability rights in the workplace. On 2 May, the Big Issue revealed that the DWP has lost more tribunals for disability discrimination than any other UK employer. It clearly points to a deeply entrenched and pervasive culture of ableism within the department. So, it’s perhaps little wonder the DWP is pushing more plans that will punch down on chronically ill and disabled people.

    Ultimately, it’s all more fumbling and underhandedness from the DWP. At present, it’s unclear when it will make these Access to Work changes. But, at the bare minimum, the whistleblower revelations show these are plans it is considering. In fact, it even appeared ready to roll-out these as recently as last week.

    It’s clear this Labour government has no intention of genuinely supporting chronically ill and disabled people. All evidence so far shows it isn’t remotely committed to removing the work barriers for them. Scaling down Access to Work in tandem with its benefit cuts shows it’s ‘back-to-work’ promises of support are nothing but hollow words.

    The Canary contacted the DWP for comment, but had received no response by the time of publication.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Katty King-Coulling (39) from Maidenhead sustained a spinal cord injury that has left her with debilitating chronic pain. Seven years on, she’s struggling with the Personal Independence Payment (PIP) benefits system and the feeling of being “not disabled enough” for help. With the proposed Department for Work and Pensions (DWP) changes to PIP, Katty believes her assessments will only get harder, while her condition and her needs will remain the same.

    DWP PIP: ‘not disabled enough’ for support

    In 2018, Katty woke up to excruciating pain in her legs, which she described as “immense burning and shocking pain”. She was eventually diagnosed with cauda equina syndrome, a rare and often misdiagnosed condition which leads to spinal cord injury caused by compression of the lower spinal cord.

    Katty was working as a healthcare assistant for the NHS when she sustained her injury but has since had to give up work. Since her injury, Katty has gone through three DWP PIP assessments and says she has struggled each time to get people to understand her disability.

    On average, it’s estimated that it costs an additional £1,010 a month for a disabled person to have the same standard of living as a non-disabled person. At her latest assessment, Katty was downgraded to the daily living standard rate of £73.90 a week, or £320 a month, and has lost her mobility funding.

    As Katty has full use of her arms and core, can walk short distances, and has no visible signs of her disability, she believes people have a harder time understanding her injury and her needs. She says she often feels “not disabled enough” to receive compassion, understanding, and help. She said:

    If you can wash your top half, if you can dress your top half, then you’re seen as not that disabled.

    But this is far from the reality for Katty, who needs her husband’s support to shower, dress, cook, and clean. She said:

    On a bad day, I’m lucky to get out of bed and the only reason why I do get up is because of my daughter. She needs me and I’m prepared to go through more pain if it means that she is looked after the best I possibly can.

    No massive sign saying ‘I am disabled’

    Like any parent, Katty’s priority is giving her daughter a healthy, happy life and her DWP PIP payments go to her daughter’s childcare. With chronic pain, it’s difficult for Katty to keep up with an active toddler, as lifting, carrying, and chasing after her daughter is all a challenge.

    Nursery has become the best solution for the family as her daughter is occupied for most of the day when Katty’s husband is at work, helping to relieve some of the pressure of balancing parenting with maintaining her own care.

    Unable to work, DWP PIP has become a lifeline to Katty and her family. But when it comes to PIP assessments, Katty said:

    It’s variable on who you have, and it shouldn’t be like that. It’s the anxiety when you go through PIP, you feel like such a fraud because to look at you, there’s nothing there. There’s nothing glaring you in the face. No massive sign saying ‘I am disabled’.

    Katty has decided to fight back and since sought support from Spinal Injuries Association (SIA), who advocate for people with spinal cord injuries. The SIA are now helping her with her appeal.

    Teresa Skinner, support line coordinator at the charity, said:

    Calls regarding benefits, particularly PIP, are a daily enquiry now, mainly because their benefit has stopped. No face-to-face assessments is a big problem: health conditions cannot be assessed over the phone properly. It causes severe hardship, not being able to get out because of loss of cars, not being able to have personal care and help around the home, the list can go on. It is causing severe hardship and further mental health problems.

    DWP PIP: scoring 4 points challenging for people with hidden disabilities

    Katty said:

    Scoring 4 in one PIP category is challenging for those with hidden disabilities, as assessments may not fully capture my condition’s impact. Hidden disabilities often have symptoms that are not visible or easily measurable, leading to an underestimation of needs and we see that even now.

    A confirmed diagnosis should validate our condition, rather than relying on a points system. Without changes, more people like us will face less validation and struggle to contribute to society if the government and working environment continue to fail us.

    Reflecting on her own experience with DWP PIP, Katty said:

    Not everyone’s cauda equina or spinal cord injury is the same. It’s variable. So, I don’t know what disabled box we have to fit in to say yes, we are entitled to PIP or to help.

    The support line for the Spinal injuries Association is at 0800 980 0501

    Featured image supplied

    By Ruth Hunt

    This post was originally published on Canary.

  • A parliamentary debate is set to take place over the Department for Work and Pensions (DWP) controversial cuts to Personal Independence Payment (PIP) for chronically ill and disabled people.

    However, given the Labour Party government’s recent response to a viral parliamentary petition calling for it to scrap its plans, it’s unlikely this will result in any meaningful changes to its policy agenda. Nor for that matter, is it probable to include any genuine engagement with chronically ill and disabled people’s valid fears. This is not least because while it is ‘a debate’, it doesn’t really constitute a full parliamentary debate in any sense.

    Shunted as it is into a separate room outside the House of Commons main chamber, ultimately there won’t be a vote on any of the proposals. So it’s largely just a glorified soapbox for the government to sell its plans to MPs, with some criticism thrown in from the handful with some integrity that oppose it.

    DWP PIP cuts: parliamentary debate incoming

    In March, DWP boss Liz Kendall finally laid out the government’s sweeping catalogue of plans to ‘reform’ disability and health-related income-based benefits. It set this out in its Pathways to Work: Reforming Benefits and Support to Get Britain Working green paper.

    Broadly, this made for a callous combination of catastrophic cuts that will harm chronically ill and disabled claimants.

    The paper included a suite of regressive reforms to make it harder for people to claim disability benefits like PIP. As expected, the changes it’s proposing will target certain claimants in particular, namely young, neurodivergent, learning disabled, and those with mental health disorders.

    Moreover, disabled people who need help with things like cutting up food, supervision, prompting, or assistance to wash, dress, or monitor their health condition, will no longer be eligible.

    Specifically, it’s increasing the number of points a person will need to score in their DWP PIP assessment to access the daily living component of the benefit. This will now require people to score four points or more in a daily living category to claim it.

    The government is now consulting on some of these DWP plans until 30 June. You can respond to this here. Scandalously however, it isn’t consulting on many of its most dangerous proposals. Of course, these are the plans that will hit chronically ill and disabled people hardest.

    Now, parliament will be having a debate over these plans. Labour Party MP Diane Abbott will be leading it on 7 May at 2.30pm.

    Government petition response has already set the tone

    The debate also comes after the government gave a atrocious response to a viral petition railing against the DWP PIP and Universal Credit cuts.

    Chronically ill and disabled Leicester West resident Abi Broomfield started the petition and it quickly took off. It demands that the Labour Party government stop the cuts it has set out in its Green Paper. In particular, Broomfield has honed in on some of the worst, most damaging proposals. Notably, these are largely cuts that will leave chronically ill and disabled people unable to work worse off. Or, these will otherwise deny people benefit entitlements entirely.

    Currently, the petition has over 16,000 signatures. After hitting 10,000, the government issued an insulting response. First, it stated how:

    The Government must urgently tackle the spiralling welfare bill, restore trust and fairness in the system, and protect disabled people. Social security reforms will therefore continue as planned.

    Following this, it only doubled down on its cruel and scapegoating rhetoric:

    Our welfare system is broken, costing almost a third as much as it does to run the NHS in England while leaving people for years on benefits with no offer of support, no hope of a future in work and no opportunity to improve their standard of living. Working-age adults who are in work are three times less likely to be in poverty than those out of work. We need to act to end the inequality that sees disabled people and people with health conditions trapped out of jobs, despite many wanting to work, and ensure our welfare system is there for people who need it, now and long into the future.

    You can read the full response here – but needless to say, it’s dismissive and callous continuity Conservative throughout.

    So it’s in the wake of this that parliament will be hosting this debate on the DWP PIP cuts. Of course, it’s likely the government will take much the same dismissive tone at this as well.

    Broomfield has therefore reached out to Abbott ahead of it offer input and support:

    Warm words at Westminster? Not good enough

    Ultimately, it should be a given that parliament gets to debate government plans that will – at minimum – impact upwards of hundreds of thousands of people.

    A recent Freedom of Information (FOI) request showed that the DWP PIP changes could in fact deny 1.3 million people part of, or all of their PIP entitlement. From the start, it has been evident the Labour government hasn’t been upfront or honest about the true scale of its proposals’ impacts.

    However, it’s not likely to start changing that now. While an Westminster debate is welcome, too many of its MPs are more than willing to go along with its atrocious plans. So far, reports suggest murmurings from “dozens” MPs opposed to the proposals. It’s not enough.

    The forthcoming debate will be a telling moment. It will serve as an indication of how Labour Party MPs are angling themselves at the vote over these plans in June. Chronically ill and disabled PIP claimants will be watching them closely. And it’s safe to say at this point, warm words won’t cut it.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • A petition over Department for Work and Pensions (DWP) benefit cuts for chronically ill and disabled people which began to go viral has now received a response from the government. In short, it is dismissive and callous – with one political party slamming it as ‘disrespectful’. So, you know what to do: sign the petition even more.

    DWP benefit cuts: a vital new petition

    In March, DWP boss Liz Kendall finally laid out the government’s sweeping catalogue of plans to ‘reform’ disability and health-related income-based benefits. It set this out in its Pathways to Work: Reforming Benefits and Support to Get Britain Working green paper.

    Broadly, this made for a callous combination of catastrophic cuts that will harm chronically ill and disabled claimants.

    The government is now consulting on some of these DWP plans until 30 June. You can respond to this here. Scandalously however, it isn’t consulting on many of its most dangerous proposals. Of course, this is those that will hit chronically ill and disabled people hardest.

    So, chronically ill and disabled Leicester West resident Abi Broomfield started a parliamentary petition.

    This demands that the Labour Party government stop the cuts it has set out. In particular, Broomfield has honed in on some of the worst, most damaging proposals. Notably, these are largely cuts that will leave chronically ill and disabled people unable to work worse off. Or, it will otherwise deny people benefit entitlements entirely.

    ‘Support, not hardship and deprivation’

    Notably, the petition reads:

    We want the Government to halt all planned benefit cuts for disabled people unable to work. Instead of reducing benefits, we want them to rise in line with inflation. We want support, not hardship and deprivation, for those who cannot work.

    We feel that disabled people who cannot work should not have their benefits cut. Acquired Disabilities can end careers, and we feel that those who previously contributed to tax deserve support. We also believe that people born Disabled need steady support without cuts.

    Broomfield told the Canary what compelled her to set up the DWP-based petition. Firstly, she highlighted that:

    Not everyone can work, and this Labour government is penalising Disabled people because of this very fact.

    And notably, the government’s plans will directly affect her too:

    As it currently stands, I, along with hundreds of thousands of others, will be losing my PIP entitlement. I rely on mine to help pay for some of the additional costs I face due to my disabilities.

    Moreover, Broomfield spelled out the brutal reality of these DWP cuts as entirely contrary to Labour’s ‘back-to-work’ claims:

    These cuts won’t get Disabled people into work; instead, they will cause serious physical and mental harm, and even deaths within our community. Plus, it’s going to seriously damage an already vulnerable NHS and care sector as Disabled people facing these cuts will inevitably have to rely on them more.

    Of course, the impact of Labour’s DWP cuts is horrific. For example, a Freedom of Information request revealed that around 1.3 million chronically ill and disabled people will lose some, if not all, of their DWP PIP entitlement.

    However, that hasn’t stopped the government from responding with no regard to the people affected.

    A pitiful response

    The DWP said on the petition’s webpage:

    The Government must urgently tackle the spiralling welfare bill, restore trust and fairness in the system, and protect disabled people. Social security reforms will therefore continue as planned.

    This utterly harsh response feels more at home with a Tory government than a Labour one. It went on to say:

    Our welfare system is broken, costing almost a third as much as it does to run the NHS in England while leaving people for years on benefits with no offer of support, no hope of a future in work and no opportunity to improve their standard of living. Working-age adults who are in work are three times less likely to be in poverty than those out of work. We need to act to end the inequality that sees disabled people and people with health conditions trapped out of jobs, despite many wanting to work, and ensure our welfare system is there for people who need it, now and long into the future.

    Abi has hit back on X:

    The DWP: “deeply disrespectful”

    A Harmony Party UK spokesperson said of the DWP response to the petition:

    The government has published a frankly deeply disrespectful response to the petition “Protect Disabled people who cannot work from planned cuts to benefits”.

    Much of it is formed of previously released information (a rundown of what we already knew) – and it leans heavily on false claims, such as the notion that cutting disability benefits will, in some sense, “protect disabled people”. The claim that the benefits system is unduly costly is also a lie. As such we are urging people to keep signing the petition and force a debate with 100,000 signatures.

    Having digested that disrespectful and lazy response, we say that it is all the more clear that those within the Commons who are against these cuts deserve to be given the opportunity to rise and speak for us in a debate – at least once.

    After all, disabled people deserve that opportunity of a voice at the very least.

    This is why it is vital that you share and sign this petition and support us in helping it reach 100,000 signatures.

    So, clearly the Labour government has no plans to change course on its cruel DWP cuts. So, you know what to do. You can sign the petition here.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • As the fight against the government’s proposed Department for Work and Pensions (DWP) disability benefits cuts rages on, something is emerging that’s making me very uncomfortable. Whilst the government and media are focusing on the part of the plans that involves making DWP PIP harder to claim and conflating it with being out of work, disabled people are eager to prove them wrong – but I think they’re going the wrong way about it.

    Instead of Instagram posts, tweets, and TikTok videos highlighting on the fact that the government want to make it harder for disabled people who can’t work, many disabled people (especially those with influence) are solely focusing on the fact that disabled people DO work.

    Some of us DO work actually. Well, good for you…?

    While I don’t doubt that these people have got good motivations, by solely focusing in the fact that many disabled people do actually work, we’re playing right into the government and media’s hands by separating the good and worthy disabled from those who are bad, lazy, and not worthy of support.

    The government and media have for a long time been working hard to paint disabled people as either those who desperately want to work but just don’t have the motivation or those who are happy to languish on benefits. They want a return to the strivers vs skivers narrative, the inspirational disableds vs the lazy scroungers who should be left to die.

    By constantly asserting that many – and especially YOU – work, you’re only playing into their hands. You’re unconsciously saying, “I’m not one of those faker scroungers rinsing the taxpayer, look at me, I work!”

    The government know DWP PIP isn’t an unemployment benefit

    At the end of the day, as much as the government claim they want to support people into work, their actions speak for themselves. There’s been no commitment to make Access to Work the wait shorter and there’s no onus on employers to make work accessible for disabled people. This isn’t about helping us to actually strive. It’s about forcing us into work or letting us die.

    And although the constant social media posts of “many disabled people work, DWP PIP isn’t an out-of-work benefit!” are done with good intentions, they all feed into the narrative that disabled people are only worthy if they contribute to the capitalist society that doesn’t care if we live or die.

    Make no mistake, the constant conflation that all disability benefits are unemployment benefits is a bad thing, but it’s also very deliberate.

    The ministers in charge of running our country and MPs constant touted out in front of the media circus definitely know that DWP PIP isn’t an out of work benefit, but they also know that the media’s constant coverage of them saying otherwise is what has helped turn the public against disabled people who need and deserve support.

    The government couldn’t give a fuck if disabled people work or not

    Of course, the government stooges aren’t going to tell the public that many disabled people rely on DWP PIP to help them get to work, or to pay for equipment when they’ve been failed by Access to Work. They don’t care that many of us, like me, rely on PIP to top up our income so that we can afford to only work the hours that best suit our bodies. They don’t fucking care how many disabled people need PIP to survive when they are so unfairly discriminated at work.

    The fact is that they don’t actually give a fuck how many disabled people do work. They just want us all off benefits one way or another. The problem is they can’t just tell the public they want to kill us. So instead, they want to appear to be supporting us with the likes of DWP PIP – whilst knowing full well that many can’t work and that they will die. Because dead disabled people mean less people they have to pretend to care about and support.

    When the government and media have sown so much hatred of disabled people on benefits into the working class public, we’re not going to change any minds with “BUT SOME OF US DO WORK ACTUALLY!!”

    All you’re going to do is play right into their hands and cause a bigger divide between those who can and can’t work, who’s worthy and who isn’t.

    They’re coming for all disabled people – not just working DWP PIP claimants

    They’re coming for us all at the end of the day, but they’re going to start with those already deemed less worthy, because it’s easier. And they know they can do it whilst so much of the fight is being focused on proving that we’re valuable.

    Whilst we’re all trying to prove we’re good little disableds worthy of support, they’ll be stripping our siblings who can’t work of their benefits (including DWP PIP), forcing them to dance to prove they can’t work then go “oh but you can do the dance you can work”.

    And then they’ll come for us too. DWP PIP is already going to be harder to qualify for and for years there have been rumoured attempts to make it means-tested. Once they’ve cut benefits as much as they can the next media churn will be “Why do these people need benefits when they work? Why are they taking our taxpayers money and get all these perks when non disabled people are working hard too?”

    With the current hatred over Motability cars, the next step from government is surely going to be to heavily lean on disabled people being given free cars to make it so that only those under a certain income can claim DWP PIP, meaning millions of us will be forced to work ourselves to death or just starve to death.

    So what should we be focusing on?

    Whilst we shouldn’t be jumping to immediately defend ourselves, that doesn’t mean we shouldn’t be pointing out how many disabled people rely on DWP PIP so that they can work, but also so that they can live.

    More than anything though, instead of having to defend that you do actually work, those with a platform should be highlighting just how many who can’t work will be affected and that many disabled people will never be able to work – but that doesn’t mean they shouldn’t be supported.

    We should be using the platforms we’ve been afforded to highlight just how cruel this government is and how many disabled people will die if these DWP PIP and other benefit cuts are allowed to happen. Because there’s nothing about us without all of us – and it’s the job of those with a voice to speak for those who can’t.

    Featured image via the Canary

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • After a heart-wrenching five-year struggle, the Department for Work and Pensions (DWP) is once again facing the Supreme Court over its refusal to provide bereavement support payments to a grieving husband. This ongoing legal battle spotlights the harsh realities faced by disabled people and their loved ones in the welfare system, which appears out of touch and unwilling to show compassion.

    The DWP: fighting a grieving husband

    Daniel Jwanczuk has been fighting tirelessly for justice after his wife Suzzi, who lived with severe disabilities her entire life, passed away. Suzzi’s disabilities prevented her from ever working, which led the DWP to reject Daniel’s claim for £4,300 in bereavement payments on the grounds that she had not met National Insurance contribution requirements.

    The rules effectively penalise disabled people who cannot work, extending hardship to their bereaved families.

    Daniel’s fight has already been won twice in court — with victories in the High Court and the Court of Appeal — exposing the injustice embedded in the system. Yet despite these rulings, the DWP has persisted in appealing, dragging Daniel through years of emotional and financial distress, all while refusing to acknowledge the unique challenges faced by disabled people and those who love them.

    Daniel himself has been forced to rely on food parcels and seek help wherever possible during this agonising time, a demoralising experience that no grieving person should have to endure. He said:

    She was the most kind-hearted, generous woman that I have ever met. I was on food parcels. I was down getting help from anyone that I could, which was extremely demoralising.

    Daniel emphasises that his fight against the DWP is not about the money but the principle and sense of justice. He said:

    From day one, it was more about the principle and the injustice than about the money. It has made my grief continue, with me feeling like I can’t mentally lay her to rest.

    A disgraceful case that the department should not be fighting

    His lawyers from the Public Law Project, including Matthew Court, have expressed frustration at the seemingly disproportionate nature of the DWP’s persistence. Court said:

    We can speculate but I don’t know the reasons why. It does seem disproportionate, but they’re the only ones that can really answer why they’ve fought this so far.

    Daniel’s case holds wider significance for disabled people who have been excluded from basic financial recognition in death simply because they could not meet the work requirements imposed by the DWP. He said:

    I want all disabled people who were unable to work due to their severe disabilities to be recognised in death. Suzzi was a wonderful person who contributed much to my life and the lives of others. She and I shouldn’t be treated any differently just because she had medical conditions that meant she was unable to work throughout her life.

    This case highlights the cruel reality for many disabled people and their families who are left behind by a welfare system fixated on contribution records rather than fairness or compassion.

    The continued refusal of the DWP to concede despite losing twice shows an administration more interested in cutting costs and clinging to outdated rules than offering dignity and support to bereaved families.

    The DWP: treating people appallingly in death, as in life

    For Daniel, this is more than a legal battle — it is about finding closure and the ability to grieve properly after losing the person he loved most:

    It has made my grief continue, with me feeling like I can’t mentally lay her to rest.

    As the Supreme Court prepares to hear this case, thousands of disabled people and bereaved families will watch closely, hoping that justice will finally be served in a system that all too often fails those who need it most.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • The Department for Work and Pensions (DWP) is facing severe criticism after a new report by Amnesty International labelled it as “consciously cruel” and damaging the lives of disabled and non-working people.

    Speaking directly to people struggling to get by on benefits, the research reveals a welfare system riddled with stigma, inflexible rules, and a relentless approach from the DWP that treats claimants not as humans, but as suspects.

    The DWP: cruel, and intentionally so

    Amnesty’s extensive investigation, based on interviews with hundreds of DWP benefit claimants, presents a depressing picture of the department’s practices. Claimants described experiences that left them feeling humiliated and targeted.

    One claimant told Amnesty researchers:

    I would often be asked the same question three times to see if I’d change my answer. The process feels like you are on trial for murder, they act like they are trying to catch you out and that you are begging.

    The report highlights how the welfare system not only fails to deliver a decent standard of living but also erodes human dignity by design.

    People on benefits are subjected to relentless checks, punitive sanctions, and a bureaucracy that leaves many without the vital support they need. One claimant told how she suffered a panic attack at the Jobcentre but was met with a threat of sanction:

    They look down on you when you walk into the Jobcentre. I had a panic attack in the Jobcentre. I couldn’t breathe, and she went ‘you better get upstairs now and see your work coach, or we are going to sanction you’.

    Another advisor reported heartbreaking cases, including a disabled man who lost both benefits and his home after missing an assessment because he soiled himself on the way to the centre and had to return home.

    Lives are being ruined

    Jen Clark, Economic and Social Rights Lead at Amnesty International UK, summed up the situation saying:

    Lives are being ruined by a system that is cruel – it erodes dignity by design. We are in a state of severe human rights violations. The social security system is impenetrable, inadequate, and for some completely inaccessible. There can be no tinkering of the system – it has gone too far, and it is too late. There must be full reform. It is broken from start to finish and intentionally sets people up to fail.

    These harrowing accounts coincide with personal stories from across the country, showing how the system is failing those who need it most.

    John Stainton, 63, dedicated much of his life serving his country as a civil servant in the Ministry of Defence, even earning an OBE for his work in Afghanistan. But after being diagnosed with aggressive Multiple Sclerosis (MS), his life took a terrifying turn.

    Forced into early retirement in 2022, he found navigating the DWP’s Personal Independence Payments (PIP) claim process “alien” and “disjointed.” Despite the impact MS had on his life, assessors initially gave him a low mobility score and refused him points for the daily reality of his condition.

    “It took me about 15 months in total from when I first rang up to when the appeal came out,” John said:

    The DWP wrote to me chuckle, chuckle, chuckle, and said they were delighted to tell me they’d decided I deserve PIP. I thought, you haven’t decided, you’ve been told by a judge.

    John added that many others with MS live in constant anxiety and discouragement, choosing not to apply or appeal because of the stressful ordeal the system forces on them:

    The DWP could treat people with a bit more compassion. The trouble is they start from the wrong process… the start process seems to be that anyone claiming benefits must be a scrounger.

    The DWP is like a production line

    John sees the thousands of disabled people he meets regularly, either desperate to contribute to society or having done so already.

    Phil Davidge, 66, from Leeds, also suffered under the DWP after unexpectedly losing his job in September 2023.

    He applied for Universal Credit early to avoid gaps but was unaware the claim would start from that day. When he tried to fix this, the DWP refused, causing him to lose a month’s benefits:

    I just didn’t have the money. I actually missed my father passing away because I couldn’t get the money together to come down [to Swansea].

    The DWP did not assist him with travel costs despite his desperate situation. Phil described the Jobcentre experience as:

    like being on a production line… they asked me the same questions in a robotic fashion as if they were reading off a script or I was talking to an AI programmed robot.

    The emotional toll of the system also came across in Carly Newman’s story.

    A single mother in London, Carly juggled part-time work with Universal Credit to cover nursery and rent costs. However, during a complicated pay month in 2019, her Universal Credit claim was unexpectedly cancelled without warning after she received outstanding holiday pay:

    When I went to pay my rent and the money wasn’t there, I just remember being at the train station on the way to work, crying.

    Faced with a cold, inflexible system, Carly was forced to apply again and wait 10 weeks to get any payment. She told the Mirror:

    The feeling you’re consistently living with on Universal Credit is one of vulnerability. The inflexibility of the system is like ‘computer says no’ situation. You’re not treated as a human. You just feel really vulnerable all of the time.

    Carly also challenged the damaging stereotypes around benefits claimants, saying:

    The narrative… that somehow we all just want to be on benefits and not to go work and have this free money. Actually most people on Universal Credit are in work and most people want to be at work earning a secure income. Universal Credit doesn’t feel secure. It feels so vulnerable and insecure and that’s a horrible feeling to have to live with, especially as a single parent. It just feels like it can be ripped away from you at any moment – no one wants to live like that.

    A broken system that is only going to get worse

    The DWP responded by stating that the welfare system was inherited broken and that reforms are underway; the same reforms that are going to be further cutting DWP support for chronically ill and disabled people, with hundreds of thousands set to be thrown into poverty.

    The voices of those forced to endure the system paint a very different picture to the DWP and government’s one.

    It is one of cruelty, anxiety, and constant threat.

    The DWP’s approach appears to have created an environment where benefit claimants are made to feel less than human, pushing the most vulnerable to the edge.

    The experiences of John, Phil, Carly, and countless others highlight a system that desperately needs more than just “tinkering.” It needs compassion, understanding, and a complete overhaul to restore dignity to those it claims to support.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • New analysis reveals that Department for Work and Pensions (DWP) planned cuts to disability benefits will hit some of the poorest parts of England and Wales hardest, deepening economic hardships in these areas. Predictably, it is London and the South East which will fare better – but even then, the cuts will have dire consequences for chronically ill, disabled, and non-working people.

    The DWP: hammering the North and Wales

    According to research by the charity Policy in Practice, people living in the North East, North West, and Wales will suffer twice the impact of those in London and the South East. This striking regional disparity threatens to widen the already stark economic divide between the wealthier south and the struggling north.

    Policy in Practice’s data highlights that the 10 local authorities most affected by these DWP cuts—including Blaenau Gwent in Wales, Hartlepool, and Blackpool in the north of England—face economic costs roughly five times the national average.

    These areas are home to significant numbers of people reliant on DWP disability benefits – particularly women – and a large proportion of their local economies are tied closely to this support.

    Deven Ghelani, director of Policy in Practice, warned that these cuts risk “entrenching deprivation” in regions with weaker economies. As Birmingham Live reported, he explained:

    These reforms will have an uneven impact on different parts of the country. Some parts of the country will get a double whammy because they have a smaller economy and will lose a larger share of it. One of the reasons they have a smaller economy is that they have more people impacted so the proposals have a serious risk of entrenching existing patterns of deprivation.

    He added:

    Together this means that deprived areas that have more people on disability benefits who risk losing out also see a greater proportionate impact – impact that hits an already struggling economy.

    Counter intuitive

    Essentially, the cuts threaten not only individual claimants but the wider economic health of these communities, where every pound matters.

    Policy in Practice further commented that these reforms will directly counter initiatives aimed at “levelling up” local economies. Without targeted investment to replace withdrawals from the benefit system, the cuts will leave these regions even further behind.

    Yet, despite these serious concerns, the DWP defended its stance. A spokesperson said that, as part of their “Plan for Change”, the government seeks:

    a sustainable welfare system that delivers proper support to help sick and disabled people into work, break down barriers, unlock work, boost living standards, and grow the economy.

    However, behind this vapid rhetoric, many disabled and non-working people across the north and Wales may soon face sharp reductions in their financial lifelines. The areas worst affected are already grappling with higher unemployment, lower wages, and fewer job opportunities.

    Removing vital support from over 1.3 million people risks pushing individuals deeper into poverty at a time when the cost-of-living crisis remains severe.

    DWP cuts will make bad situations even worse

    The analysis reinforces fears that the government’s welfare reforms are failing to protect vulnerable groups and instead are disproportionately penalising regions long neglected by economic growth.

    This “double whammy” of cuts and economic weakness threatens to widen the gap between different parts of the country, leaving disabled people and jobseekers in some of the poorest communities struggling even more.

    Policy in Practice’s report starkly exposes the real-world consequences of the DWP’s policies. It shows that disabled people—and the places where they live—are bearing the brunt of a system that seems more focused on reducing welfare spending to appease the rich and powerful than on supporting those who need help the most.

    As these reforms loom, communities in the North and Wales face an increasingly uncertain future, with disabled and non-working people confronting the harsh reality of cuts that not only undermine their individual security but threaten the social and economic fabric of entire regions.

    Featured image via the Canary

    By The Canary

    This post was originally published on Canary.

  • The UN Committee on the Rights of Persons with Disabilities (UNCRPD) has raised significant concerns regarding Canada’s assisted dying/suicide laws, specifically the Medical Assistance in Dying (MAID) scheme, which permits individuals experiencing “intolerable physical or psychological suffering” due to serious and incurable disabilities to seek assisted death.

    The UNCRPD has called for the Canadian government to cease what it describes as the euthanisation of patients based on “negative, ableist perceptions” that undervalue the lives of disabled people.

    UNCRPD slams Canada’s assisted suicide laws

    The committee’s objections centre around the proposal to extend MAID to those whose only underlying medical condition is a mental illness by 2027. They assert that the current legislation perpetuates a harmful narrative that equates disability with suffering, ignoring the systemic issues such as inequality and discrimination that exacerbate the experiences of disabled people.

    The UNCRPD’s statement highlights that the notion of “choice” posited by the government creates a misleading dynamic, effectively suggesting that ending one’s life can be a valid option for those facing disability-related challenges, rather than enhancing support systems that could alleviate suffering.

    Evidence presented by the Ontario Office of the Chief Coroner indicates a troubling increase in the number of disabled people who are coerced into assisted suicide, prompting the UNCRPD to call for a reassessment of how the government addresses “systemic failures” in essential services such as accessible housing, healthcare, and employment support.

    Krista Carr, CEO of Inclusion Canada, echoed these concerns during a recent conference, emphasising that the narrative around assisted suicide as a “choice” overlooks the desperation faced by many disabled people in obtaining necessary support.

    Carr remarked that assisted suicide is currently being positioned as a preferable option for those trapped in challenging circumstances, where adequate care is unavailable, asserting that it is indeed “not a choice” for those truly in distress.

    Implications in the UK

    In the UK, the implications of similar legislation are being scrutinised ahead of the progression of Kim Leadbeater’s Assisted Suicide Bill, which seeks to allow patients in England and Wales deemed terminally ill with a prognosis of six months or less to seek assisted suicide.

    Paralympian Tanni Grey-Thompson has voiced her strong disapproval of this bill, warning that it could lead to the devaluation of disabled lives and create an environment where people feel coerced into viewing death as their “best” option – much like has happened in Canada.

    During a session in October 2024, Grey-Thompson articulated her growing concerns as she examined the issue, particularly highlighting the rapid erosion of safeguards in other jurisdictions where similar laws have been enacted.

    She recounted troubling comments she has received, such as, “If my life was like yours, I’d end it,” reflecting a societal undercurrent that could place further pressure on disabled people. This raised questions about the perceptions of disability and the future trajectory of support for those who may be struggling with their circumstances.

    As the UK’s Assisted Suicide Bill moves towards Report Stage and Third Reading, it will present MPs with additional opportunities to reconsider the implications and moral ramifications of such legislation on the disabled community and the broader societal values it endorses.

    With ongoing discussions surrounding assisted suicide and disability rights, the critical voice of those within the chronically ill and disabled community continues to advocate for a system prioritising support and equality over coercing people into death.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • Regardless of the activism disabled and chronically ill people have been doing now for over ten years, including warning the general public of what potentially lies ahead, it seems that we have now reached the point many feared regarding Department for Work and Pensions (DWP) benefit cuts. After 15 years of austerity and now a “Labour” government determined to outdo the Tories, many are extremely concerned and unsure what will happen to their entitlements and support, specifically DWP Personal Independence Payment (PIP).

    DWP PIP cuts are coming

    With the recent discovery of a survey (DO NOT FILL IT OUT, IT’S NONE OF THEIR BUSINESS) asking claimants what they spend their money on – along with similar ones by charities and organisations like There for ME and Scope – many chronically ill and disabled people are terrified as to what will happen to their DWP PIP support and whether they will still be entitled to it.

    DWP PIP is a payment that chronically ill and disabled people receive regardless of whether they are in work or not. It is to support with the additional costs of being disabled.

    But as of Labour’s Spring Statement and Green Paper, it has become clear that this entitlement is going to be reduced or removed for up to 1.3 million people. Along with many who currently receive this entitlement suddenly being left without it, there are also plans to push these chronically ill and disabled people back into work if they also get Universal Credit.

    Are they taking the (DWP) PIP…?

    Although I work as a writer and activist at the Canary and I am very lucky to have a partner that works and supports me, I am also incredibly lucky to have an amazing bunch of understanding work colleagues, who all live with chronic illnesses.

    But many aren’t so lucky and don’t have this support – making these incredibly concerning times for any disabled or chronically ill person this affects.

    Being a chronically ill and disabled person who, due to Universal Credit and living with a partner that earns over the threshold to get it, I have already lost my full health element of my entitlements. This includes my National Insurance contributions. As it stands, I already have to work around nine hours a week to cover these payments, or pay this out of my PIP entitlement.

    So, if my PIP was stopped this would be the reality for me.

    Although I look “absolutely fine” to most, I am in fact chronically ill and disabled, not workshy, and not a scrounger for getting DWP PIP either.

    Labour PIP takers

    I live with Ehlers-Danlos syndrome (EDS), atlantoaxial instability (AAI), craniocervical instability (CCI), postural orthostatic tachycardia syndrome (POTS), myalgic encephalomyelitis (ME/CFS), gastroparesis, and epilepsy, to name a few of my conditions – not unlike thousands of others in the UK. And, along with the appointments and recovery times that come with these chronic illnesses and disabilities I live with, the following reflects an average four-month period in my life.

    So far this year I have had four gastroparesis flares where I vomit continuously for around 24 hours – then needing around a week to recover.

    I have had dumping syndrome twice (where I have uncontrollable diarrhoea), both times lasting around 48 hours, needing around two days to recover.

    I have had severe vasomotor rhinitis causing post nasal drip that has been repeatedly getting worse, resulting in no sleep unless upright for around two weeks each time. This needed a doctors appointment and sleeping tablets along with an urgent private ENT appointment to finally get the correct treatment.

    I have also had a deterioration in my POTS symptoms, lasting around 24 hours each time. This has resulted in me having to elevate my legs for long periods, whilst still awaiting a private appointment with my POTS specialist.

    Therefore, if I was working or forced to work fulltime this year, I would have already missed nearly seven weeks out of the 15 working ones. I have only physically managed to attend four protests and write six articles from home for the Canary.

    This is just one example of a chronically ill and disabled persons life who may now lose the support of DWP PIP.

    Really taking the (DWP) PIP now…!

    There are at least 2.9 million people who live with either EDS, POTS, ME, long Covid, epilepsy, or a combination of them. These being just some of the conditions that currently allow an entitlement of PIP. With there currently being around 3.7 million people receiving DWP PIP, even if by some stroke of luck or a miracle taking their support away suddenly makes people better or cured, where are the jobs, then…?

    As Canary journalist Rachel Charlton-Dailey recently said there are seven (yes, SEVEN) jobs that are actually available for people with chronic illnesses and disabilities that would allow them to work from home part time. And seriously, who would actually employ someone who doesn’t know from one day to the next whether their going to be well enough or able to work, even if they really wanted to? Let alone the fact that taking peoples entitlements and financial support away doesn’t suddenly make them better, quite the opposite in fact.

    The impact this will have on already isolated and vulnerable people will be devastating. In my opinion, this isn’t just an attack on chronically ill and disabled people, specifically people living with invisible disabilities who will be affected the most.

    This is an attack on the once-proud mindset that allowed the foundations of the NHS, social security, and social housing to be built. We are being taken further away from welfare and closer to warfare purely to create wealth for rich people at the detriment of poor people.

    I also honestly despair at the millions of people whose blatant ignorance is allowing this to continue to happen. Propaganda might make you discriminate, but trust me, disability does not.

    Disclaimer:

    On writing this article I had a fourth gastroparesis flare that lasted over a week. Not only was I unable to move out of my bed I lost two pounds in the process. Apart from my partner Steve I was completely isolated.

    I honestly don’t think I would still be here if it wasn’t for his support over the last decade, and as many will know, all of my conditions were originally dismissed as mental health issues prior to him attending appointments with me. This included my epilepsy that was dismissed as psychiatric and a ‘childhood trauma’, and therefore left untreated for over 10 years, including my tonic clonic seizures.

    This is not uncommon in the chronic illness community, with many, specifically women taking years to get a diagnosis. It seems having a dick to swing makes all the difference.

    The point being, Steve has had to finish this article for me. Just another reason why taking away DWP PIP from people like me is just plain wrong.

    Featured image via the Canary

    By Nicola Jeffery

    This post was originally published on Canary.

  • The National Institutes of Health (NIH) is collecting sensitive medical records from federal and commercial sources for Department of Health and Human Services Secretary Robert F. Kennedy Jr.’s new “autism research” initiative, which will give external researchers access to “comprehensive” patient data, representing “broad coverage” of the U.S. population. The NIH will also be creating a…

    Source

  • Disabled-led arts organisation Disability Arts Online (DAO) has announced the launch of dis_place, an innovative new digital gallery space dedicated to removing access barriers to exhibitions while platforming the work of disabled, D/deaf, and/or neurodivergent artists with a focus on intersectionality. dis_place will be led by Nathalie Boobis who has been appointed as DAO’s first ever in-house curator. For the soft launch of dis_place, Disability Arts Online has partnered with MIMA, Middlesbrough Institute of Modern Art, to present a major exhibition of work by D/deaf, disabled and neurodivergent artists. After the success of Towards New Worlds at MIMA earlier this year, this exhibition will tour to dis_place from 21 May – 19 December 2025, with selected works reimagined for online audiences.

    Following this pilot exhibition, dis_place will host its inaugural exhibition featuring original works curated by Nathalie Boobis, launching in January 2026.

    dis_place and Disability Arts Online (DAO)

    DAO is internationally recognised for its sector-leading accessible website for disability arts, and has over two decades of editorial, artist development, and activist work in the sector. dis_place stems from this work and presents a new phase for the organisation. It will be a 21st century gallery space for presenting curated exhibitions and new commissions of artists and themes, deeply rooted in the discourses of disability arts, crip, sick and neuroqueer theory and politics.

    In development since 2020, the gallery project has been the result of Disability Arts Online working in partnership with digital agency Surface Impression, consulting with its community and key stakeholders at every stage. It has been made possible due to funding from Arts Council England.

    Trish Wheatley, Chief Executive of Disability Arts Online, commented:

    We’re really excited to be launching dis_place as a curated, disabled-led gallery space that platforms the work of disabled, D/deaf and neurodivergent artists. As an organisation, we primarily showcase, critique and champion art and we are taking this to the next level with Nathalie’s appointment as curator. Our aim is to make dis_place truly sector-leading in terms of access, creating a high-quality audience experience that compromises on neither access nor aesthetics.

    Nathalie Boobis – new DAO curator appointment

    Nathalie Boobis is a disabled and neurodivergent curator, currently based in Newcastle. She was previously the director of Deptford X, a visual arts organisation and annual festival in South East London, from 2018 – 2024.

    Having trained as an artist at the University of Brighton, she went on to study for an MFA in curating at Goldsmiths. Prior to Deptford X, Nathalie held a curator role at SPACE in London where she worked on the exhibitions and commissions programme. She was also previously a junior fellow both at Goldsmiths within the curating department and at Goldsmiths CCA in its first year.

    As curator of dis_place, Nathalie will curate the exhibitions for the gallery and commission new art work to foreground intersectional disabled perspectives with a view to driving sector change.

    Nathalie Boobis, Curator at Disabilty Arts Online said:

    DAO dreamed up dis_place with a utopian ideology around accessibility and for me, as a curator, this sense of possibility that underpins the gallery’s existence is what is so exciting about the project. The form and the function of dis_place aim to challenge assumptions and limitations around access and disability, and my plans for the space are to curate exhibitions and commission new work that are led by artists’ practice in these areas.

    A dedicated gallery space for research-led exhibitions, commissions, and showcases of the work of disabled artists is so needed right now. dis_place will bring the practice and discussions within the disability arts community into a wider context. For me, this is an opportunity to lead a project from my lived experience.

    Towards New Worlds, as a landmark exhibition of work by disabled artists, is the perfect pilot exhibition for us to launch the gallery with. The exhibition deals with perception and sensory experiences so it has been exciting for me to work with Aidan to translate these works for a digital space. We can’t wait to share it with audiences next month.”

    dis_place’s pilot exhibition – Towards New Worlds

    Curated in collaboration with curator, artist and cultural activist Aidan Moesby and Helen Welford, MIMA’s curator, Towards New Worlds was a large-scale exhibition sharing artists’ experiences of seeing, hearing, feeling and sensing the contemporary world.

    The exhibition explored a rich variety of human perceptions and sensory experiences through works of art, which make connections between the artists’ internal worlds and their external environments. Called ‘ground-breaking’ by the Art Newspaper, this exhibition is believed to be the largest exhibition of contemporary work by D/deaf, disabled, and neurodivergent artists to take place in the UK in the twenty-first century.

    The exhibition at dis_place will open Towards New Worlds to wider, more diverse audiences. The artists confirmed to feature in Towards New Worlds at dis_place are Richard Butchins, Leah Clements, Joanne Coates, Ma?gorzata Dawidek, Jade de Montserrat, Colin Hambrook, Molly Martin, Louise McLachlan, Aaron McPeake, Sam Metz, Carrie Ravenscroft, Christopher Samuel, Jenni-Juulia Wallinheimo-Heimonen.

    Towards New Worlds Digital will run 21 May – 19 December 2025.

    Aidan Moesby commented:

    Towards New Worlds explored how we respond through sensing, feeling, and thinking, to our experience of the contemporary world. Reimagining Towards New Worlds for a digital space does not replace the physical experience but creates another dimension through which to explore the exhibition.

    Exhibiting Towards New Worlds in a bespoke digital gallery, designed to be creative and accessible, brings rich potential for audiences’ experiences of important artworks. Like at MIMA, access will be integral to the experience of the exhibition via the dis_place gallery. We can’t wait for more people to encounter the artworks and ideas behind the show.

    Towards New Worlds digital launch event

    Disability Arts Online is marking the launch of dis_place’s pilot exhibition with an online event on 21st May 2025 at 2pm. Hosted by Nathalie Boobis and Aidan Moesby, it will include a tour of dis_place with the new Towards New Worlds Digital exhibition, along with discussions with featured artists. Tickets are free and can be booked via www.disabilityarts.online/dis_place-gallery

    Featured image via Rachel Deakin

    By The Canary

    This post was originally published on Canary.

  • The long-awaited and much-government-touted ME Delivery Plan is shaping up to be, predictably, largely a whitewash. As ministers slowly drip out pieces of information about the upcoming publication, it’s becoming increasingly obvious the plan is set to offer little more than lukewarm gestures, rather than anything remotely resembling meaningful change for people living with myalgic encephalomyelitis (ME).

    However, it’s a wonder that anyone in the ME community is even mildly shocked at this. Nothing has really changed about the abusive, gaslighting government and NHS patient culture for people living with the devastating disease. That’s painfully evident in the fact multiple patients with severe ME are still trapped in a vicious ouroboros of NHS physician arrogance and ignorance – one feeding the other in a harrowing hospital care catalogue of continued errors.

    What’s more, the plan isn’t emerging into a vacuum. Increasing NHS privatisation and mass government-sanctioned job losses, Department for Work and Pensions (DWP) disability benefit cuts, need we go on? The writing is on the wall. And what that writing says is that the current Labour Party government can’t be trusted to come out to bat for the chronically ill, and often bed-bound or housebound millions missing.

    So why exactly would anyone think that it’s about to turn this appalling situation on its head now?

    The ME Delivery Plan: no new funding is NOT a shock

    Let’s start with the elephant in the room: new funding for ME research.

    We’ve known since at least February that the government has no new funding forthcoming for this. In particular, parliamentary under-secretary for the Department of Health and Social Care (DHSC) Ashley Dalton confirmed it. This was in a response to a written question.

    An article in the Times presented this like it was a shock, reporting how:

    Charities and MPs said they were “incredibly disappointed” and that without extra funding efforts to improve the lives of people with ME would fail and it would be hard to unlock new treatments.

    The Times quoted one of the usual suspects, namely a long-controversial leading ME charity. This was Action for ME (AfME) chief executive Sonya Chowdhury. The non-profit has nothing if not a problematic past. It’s one of holding back, or even actively sabotaging progress for patients, wrapped up as it was in the junk PACE trial part-funded by the DWP. For all its rumblings that it has reformed to centre patients, it still rubs shoulders with prominent biopsychosocial (BPS) circles and proponents.

    Behind the scenes, Chowdhury has literally been working with successive governments on the delivery plan. Specifically, she represents AfME on the ME/CFS Delivery Plan Task & Finish Group. It’s therefore hard, to nigh-on impossible really, to imagine Chowdhury would be unaware of the government’s intentions for funding.

    Arranging the deck chairs on the Titanic crisis in ME care

    Now, a new response from Dalton has only drove all this home further. Specifically, in another written question reply on 4 April, she said in one crucial part that:

    We also intend to provide additional support to ME/CFS researchers to develop high quality funding applications and access existing National Institute for Health and Care Research and Medical Research Council research funding. All research funding applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. Our forthcoming ME/CFS delivery plan will outline the additional support we will offer to the research community to increase the volume and quality of applications and, therefore, increase the allocation of funding to this area.

    To put it simply: there’s no new funding. When the government talks of “boosting” it for ME research, as Dalton said earlier in her answer, all that really seems to mean in practice is giving researchers some advice on how to make grant applications. That might actually seem more than a little insulting to researchers as well. It’s basically implying the lack of quality research for ME revolves around their failures to secure funding. This is in lieu of the glaring lack of it available in the first place.

    The Canary has also highlighted before how the funding focus has largely revolved around harmful psychologising treatments. So ring-fenced funding for causes and genuine curative treatments is essential. Not so to the upcoming ME Delivery Plan it seems. ME research will continue to compete with research for other better-recognised conditions. But don’t worry. Researchers will have DHSC top tips to pip other patient communities also desperately needing more research funding to the post.

    It’s another case of the government trying to look like it’s doing something. In reality, all it’s doing is “rearranging the deck chairs on the Titanic”. This sinking ship of a spiralling crisis that is surging numbers of people living with ME and long Covid with no lifeboat curative treatments in sight.

    Connect the dots: this government couldn’t care less about ME patients

    Moreover, while we say we’ve known since February, in reality, this has been obvious for a good time longer. A government that can’t even commit to real-terms public funding increases for the NHS is hardly about to plough more funding into tackling one specific, and frankly, under-recognised disease.

    Throw in the fact that Labour’s rhetoric around the DWP cuts has been leaning heavily into ableist ‘work-shy scrounger’ narratives and it’s really no major surprise.

    The Canary has after all, also connected the dots between its attack on chronically ill and disabled people unable to work, and its plans to coerce them into its new workfare programmes. In fact, we revealed how the biopsychosocial lobby and model is deeply embedded in one key work programme – WorkWell – the DWP has been trumpeting.

    The BPS model has long been a feature of the Labour right’s approach to disability benefits. Crucially, it was under Tony Blair’s New Labour government that a chief medical adviser for the DWP – Mansel Aylward – embedded this into the government’s approach to welfare. You can read more about this murky history here.

    But the point is that Blairites’ neoliberal Starmerite successors are picking up this mantle and running with it. Far be it for a Labour government fixated on more austerity through public service cuts to put its money where its mouth is for ME patients. Instead, schemes like WorkWell and controversial Independent Placement and Support (IPS) are more on-brand.

    That is, forcing ME patients into work will save it money overall, so that’s where Labour is more likely heading. It will publish the ME Delivery Plan in this context. In short: it was only too predictable that new funding was never going to happen.

    New ME specialist services? Not likely with the ME Delivery Plan

    To sum up then: work programmes cost less money than funding research, or ensuring a stable and sufficient social security safety net. It means more ME patients shunted into work – a boon in Labour’s mind for business, tax revenues, and the welfare purse. Though obviously, it’s all at the significant risk of severely worsening their health. Those unable just lose out on DWP disability entitlements regardless.

    No matter – not Labour’s problem, because there’s no real treatments or services ME patients can access anyway. So, any concern it has that exacerbating ME patients’ health condition might overload an already stretched NHS and eat into its budget, is moot. It’s counting on ME patients not accessing services at all – because they won’t exist.

    And it’s sure looking like Labour doesn’t intend to change the provision available now. From what we can glean ahead of the delivery plan itself, this very likely won’t set out more government support for specialised ME services either. Notably, Dalton responded to another question that Labour MP Chris Ward submitted. This concerned:

    what assessment his Department has made of the potential impact on clinical support staff of referring patients with long covid to ME/Chronic Fatigue Syndrome specialist services.

    Dalton replied that the government has made no such assessment, only that:

    NHS England has published commissioning guidance for post-Covid services which sets out the principles of care for people with long COVID.

    There is also specific advice for healthcare professionals to manage long COVID. Patients should be managed according to current clinical guidance, such as that published and updated by the National Institute for Health and Care Excellence (NICE), the Scottish Intercollegiate Guidelines Network and the Royal College of General Practitioners. Whilst NICE guidelines are not mandatory, the Government does expect clinicians and healthcare commissioners to take them fully into account.

    On top of this, she highlighted that:

    Commissioning, service provision and staffing for both myalgic encephalomyelitis services and long COVID services are the responsibility of local integrated care boards.

    Reading between the lines then, it implies that through the delivery plan, the government won’t mandate the commissioning of new services. Nor, again, will it deign to fork up new funding allocations for it. But then, why would it? See again: all the above. This is another instance in which it was something already supremely obvious.

    Not that we can trust Labour or the NHS anyway

    All that said, it’s rather hard to trust that the government and NHS would bring forward genuinely decent services for ME patients anyway.

    As anyone living with it will tell you, the ‘specialist clinics’ for ME that do exist are absolutely woeful. At best, they’re abysmally underequipped to help ME patients. Since there’s no current treatments or cures, it’s largely advice-based. The most these can usually do is suggest symptom management techniques like pacing.

    At worst, these have been a hotbed of actively harmful so-called ‘treatments’ like graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for years.

    The National Institute for Health and Care Excellence (NICE) that Dalton referenced may have removed GET as a treatment recommendation, and downgraded CBT in its new 2021 guidelines, but that hasn’t stopped specialist services promoting them anyway. That is, even now, some of these services are offering slyly rebranded versions of this, such as Bristol ME service’s lead Peter Gladwell’s ‘pacing up’ approach. NICE guidelines are, after all, not mandatory.

    Will the delivery plan do anything to hold healthcare providers accountable for this? Once again, it’s doubtful.  And, there was nothing in the December 2024 interim delivery plan that suggested it would either.

    Did we mention arch BPS promoter Simon Wessely is still on the NHS England board? The NHS commissioning new services without a BPS approach is looks a lot less likely while he has a steer.

    Severe ME services seem even more unlikely with the ME Delivery Plan

    Moreover, while it would be nice to think the plan will commit to commissioning specialist NHS services for severe ME patients, similar problems abound.

    As the Canary’s Steve Topple previously underscored:

    This narrative around the Royal Devon and Exeter Hospital having a protocol for severe ME in an inpatient setting is admirable.

    But let’s be realistic: all any of this will do is possibly – not definitely – stop severe/very severe ME patients from starving to death.

    If the interim delivery plan is anything to go by again, there won’t be a lot on this in the forthcoming publication either. All we got was another “work with stakeholders to consider” type promise to:

    better support health commissioners and providers to understand the needs of people with ME/CFS, what local service provision should be available and how existing national initiatives to improve accessibility of health services can be adapted or best utilised for people with severe or very severe ME/CFS – by July 2024.

    That’s a far cry from a pledge to fund and commission new specialist severe ME services. And these would be arguably even more complex to implement – as nothing like it currently exists.

    Dalton’s response on general service commissioning seems to pass the buck onto Integrated Care Boards (ICBs). So, this Labour government – always one to rest on its laurels rather than take concerted action – is not about to break a habit of its to-date parliamentary term lifetime.

    More than three years of waiting, and it’s just more hollow hand-wringing that awaits us

    According to Dalton on 2 April, the repeatedly delayed publication is now coming at the end of June.

    By then, it’ll have been over three years since then Conservative health secretary Sajid Javid launched work on the damn thing.

    The Tory government at the time originally promised to publish this by the end of 2022. Then, it was meant to be by the close of 2023. Then, it was going to be published in 2024 – with ministers rather cagey on the definitive dates. To be frank, we’ve lost count of the number of times first the Tories, and now Labour have delayed its publication. Most recently, Labour had promised it for March. Yet, that came and went with not a delivery plan document on DHSC site.

    Purportedly, the government needs another couple of months to shore up its document with stakeholders. This is to – we kid you not – ensure its “as ambitious as possible”. Because apparently, two years and ten months wasn’t quite enough time to do that.

    In May 2024, I wrote for the Chronic Collaboration about the Westminster debate for ME Awareness Day. In this, I expressed how:

    At a previous debate in 2018, the Chronic Collaboration’s Steve Topple wrote for the Canary that parliament had offered a “ray of hope” to the ‘millions missing’ with the devastating disease. Six years on and this glimmer of possibility has all but faded. Not least because at this latest parliamentary affair, ministers were still hand-wringing over all the same problems raised over half a decade ago.

    Now as the auspicious 12 May is rapidly approaching again, the ME community will still be minus the delivery plan. However, with the way it’s shaping up, a meagre but at minimum, benign document full of monumental “hand-wringing”, might be the best that we can hope for.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • The U.S. Department of Health and Human Services (HHS) recently announced that gender dysphoria is not protected under Section 504 of the Rehabilitation Act. In 2024, the Biden administration issued a final rule that interpreted Section 504 to include gender dysphoria. However, in a brief statement, HHS Secretary Robert F. Kennedy Jr. clarified his view that references to gender dysphoria in…

    Source

    This post was originally published on Latest – Truthout.

  • A vibrant new, inclusive online community has sprung up to fight back against the Labour Party government’s brutal Department for Work and Pensions (DWP) disability benefit cuts and the rampant ableism these plans have emboldened.

    Filling a vital niche, Disability Rebellion is one disabled artist, writer, and activist’s answer to a rights movement that too often still, excludes chronically ill and disabled people unable to turn out to in-person demonstrations.

    The Canary spoke to founder Atlanta about the new group, and its ambitions for taking on the impending cuts.

    Disability Rebellion: ‘galvanised into action’ by ‘cruel DWP cuts’

    After the Labour Party DWP boss Liz Kendall announced the government’s suite of regressive disability benefit cuts, Atlanta launched Disability Rebellion towards the end of March.

    Currently, the group spans two social media sites. On X, it has a community that X users can request to join. Over on Facebook, there’s a landing page, alongside a similar private group to become a member.

    In a nutshell, it describes itself as:

    a feisty fightback against ableism + government cuts. A space free from ableists!

    That is, in essence, the basic premise of the new group. It’s a welcoming online community and safe space for disabled people to organise. In that vein, Atlanta explained that:

    There is a strong emphasis on being a supportive community where we disabled people can help each other, support each other and be there for each other. Such solidarity and support is needed at this difficult time for disabled people, where we are not only having to manage our disabilities and illnesses, but also having to fight for the healthcare we need, fight against hateful rhetoric and ableism, keep a roof over our heads and fight against the cuts. It is a lot to manage for anyone alone and I hope that as a community we can help each other get through this.

    Significantly, Atlanta has expressed how she was “galvanised into action” by the government’s DWP Green Paper announcements. In her online blog, she confided how these impacted her and were the impetus for the new group:

    The cruel government cuts to disability benefits felt like I had been dumped into an ice bath. After a decade of being trapped in the agonising, mind-numbing fugue of chronic migraine, I woke up to harsh reality; the anger and despair was immense. I could no longer sit there and watch as the government gutted disability benefits and continued the work started by the Tories.

    This is when the Disability Rebellion was born.

    Atlanta told the Canary that its aims are to:

    put pressure on the government to abandon the cuts, to raise awareness of the ableism in our society, to fight back against anti-disabled hate, to challenge the harmful and hateful rhetoric coming from the government about disabled people, and to provide a supportive environment where rebels can network with each other for support and solidarity without the fear of abuse from trolls and ableists.

    True inclusivity means breaking the mould on traditional methods of activism

    Straight away, it’s evident that Atlanta’s own experience living with chronic health conditions has fed into the vision for the group. Notably, while the moment has called for concerted boots and wheels on the ground action, it shouldn’t mean bed-bound and house-bound disabled people are left out of forging the fight back.

    In fact, chronically ill and disabled people at home are arguably some of the voices most needed. Notably, it’s this demographic who are more likely to be among those unable to work.

    Of course, it’s also the case that DWP cuts will hit them the hardest. The government has justified these plans through hostility to those who can’t work. All the while, ‘disability confident’ work-from-home part-time positions are shamefully sparse, to virtually non-existent.

    So, Atlanta told the Canary that:

    We are creating a community where disabled people from all over the country can come together to oppose ableism and the cuts – in whichever way they can. The difficulty disabled people have is that we’re typically isolated in a largely inaccessible world – and so it can be difficult for us to be represented and to register our discontent and dissent using traditional methods. It can be difficult for many disabled activists to get to  protests and so, disabled people from over the country are coming together in this online community to share ideas and work together in a supportive environment to find ways to effectively oppose ableism and the cuts to welfare.

    Moreover, she articulated that she wants Disability Rebellion to embody inclusivity:

    We recognise that disability is intersectional, affecting people from all backgrounds, and so Disability Rebellion is an inclusive movement that represents disabled people, regardless of who you are, where you are from, and regardless of sexuality, gender, sex, age, disability and religion. It has been amazing seeing people from all backgrounds coming together to fight back. There is strength in numbers. If we are united, we can stand up as one large community and tell society that “No, this is not how we are meant to treat disabled people and other marginalised groups.” It is easy to divide us – especially in a time where so many people (not just disabled people) are struggling to have their basic needs met – so we must resist that by working together and being inclusive.

    In short, Disability Rebellion has thrown down the gauntlet in the disability rights movement. It’s posing a vital challenge to all groups fighting on the welfare cut front. This is: what good is a movement advocating for societal inclusivity, if it isn’t embedding this within its own work?

    An ‘evolving and growing’ community with bold plans

    Speaking to Atlanta, it’s clear the group has bold plans to boot for all this.

    The group wants to “educate the public” about the lived realities of being disabled.

    On top of this, Atlanta envisages the group going for charity status. In particular, she wants to explore this option in order to raise funds for the group’s future activism.

    She also hopes that the group can assist in funding legal cases that disabled people bring to oppose the DWP cuts. Specifically, she articulated that she’d like:

    to see a mass class legal action against the government and I’m sure we could work with other disability movements and organisations to make this possible.

    There’s no shortage of ideas. Atlanta mused that she also eventually intends for the group to:

    have a team of advisors on board who can help disabled people advocate for their rights.

    Overall, she noted that:

    As this is an evolving and growing community, we are excited for the future and can’t wait to see where this takes us next.

    However, as it says on the tin, it’s a ‘rebellion’ first and foremost – a focal point for a call to action. This is precisely what Atlanta wants to see the group become. In particular, she relayed to the Canary how Disability Rebellion is, in part, a response to the urgent need for direct action:

    We want to make some noise – not just online – so we want to eventually organise direct actions (such as protests) that are accessible for disabled people. We would like to work with other disability movements, charities and organisations who align with our values. We recognise that we need training because this is new to most of us. We’d welcome all the help we can get!

    Fighting ableism brings out all the bigots

    The set up as private groups across the two platforms has enabled Atlanta and fellow admins Jessica and Matt to moderate the content. Atlanta lamented how necessary this has been. Unfortunately, but perhaps unsurprisingly on the cesspool of billionaire-owned social media that have allowed bigotry to fester, and at times actively fanned it, the group has faced the very “rampant ableism” Atlanta started the group to dismantle.

    Needless to say then, Disability Rebellion has of course attracted a rancid panoply of far-right ableist detractors:

    The only negative response has come from ableist trolls online and uniformed members of the public who believe the rhetoric against disabled people. Some of the abuse I’ve seen directed at myself, other members and members of the wider disabled community has been quite horrific, with some sinking to fascism and demanding that disabled people be eradicated from society because we are a drain on society, according to them.

    However, Atlanta and team have only seen this as all the more reason for Disability Rebellion to press on:

    every time we see comments like this, it provides further motivation to stand up and counter that violent narrative.

    In short, the group won’t be cowed – the ecosystem of hate is exactly why it has sprung up – and it won’t be silenced.

    What’s more, this has paled in comparison to the broad and spanning support Disability Rebellion has compelled. Atlanta said that:

    We are totally blown away by the response to our growing movement – which has been mainly positive – with a lot of support and encouragement coming from disabled people, activists, welfare charities, writers, health professionals and other members of the public. It seems that there has been a need for something like this. It is a way to channel our anger and fear into something positive and proactive. Often we feel powerless and unable to fight back and I believe that Disability Rebellion provides that channel through which we can fight back and empower each other to do so.

    Disabled people are ‘here’ and will be ‘seen and heard’ by the DWP

    Under the surface, this has been a rebellion brewing for a long time. Ahead of the DWP announcement, the corporate media had been leaking and speculating over the government’s plans. This of course, as the Canary has been pointing out, was all about exploiting the uncertainty and disabled people’s fears for clicks and resulting ad revenue.

    Amid this shitstorm of right-wing press and political maneuvering, Atlanta was already connecting with communities online. She detailed that:

    I have spoken to many disabled people and carers over the last few months who are angry and afraid for their futures. People who join this movement are tired and frustrated. We’ve had enough of being treated as less than human, as if we don’t count because we’re not seen as productive because many of us are unable to work. Disabled people are subjected to so much abuse – especially online – no doubt driven by the government’s anti-disabled rhetoric which is magnified by mainstream media. After 14 years of hell for disabled people under the Tories, we are being forced to endure it for much longer under the Labour government. It feels like a betrayal, because the Labour Party is meant to represent the working class – which includes disabled people too. We feel like our lives don’t count because many of us aren’t “working people”. So we want to get together to rebel against the ableism, hate and benefits cuts.

    Ultimately, Atlanta expressed that Disability Rebellion will be a force for amplifying chronically ill and disabled people:

    All too often, disabled voices are being drowned out by a government and mainstream media hostile towards disabled people. We must fight this rising tide of hate.

    We want to be heard, because it is difficult to be heard and seen by society. I often get that feeling the the government and some members of society would rather we were not seen and not heard. It feels like they want to pretend we do not exist. We want to say we’re here and we’re not going away, and we will be seen and heard.

    While it’s early days, it’s clear Disability Rebellion plans to pull no punches, in punching up against the government, media, and far-right forces trying to destroy disabled communities in the UK. Needless to say, there could not be a more crucial time for an online community like this.

    You can join Disability Rebellion on X here, or on Facebook here.

    Featured image supplied

    By Hannah Sharland

    This post was originally published on Canary.

  • At a fundraising gala, a charity peddled so-called ‘therapies’ forcing compliance, denying autonomy, and “grooming” children to suppress their behaviours and inner selves. Adults have been bullying children, and even violently restraining them in schools. Parents have forced dangerous bleach-based ‘cures’ on kids. This isn’t the far-removed reality of some distant, disgraceful UK times past. No, this is the shameful situation for Autistic adults and children in the UK today. Enter: Autistic Inclusive Meets (AIM) – a grassroots community group that’s been taking on the obscenely persisting ‘cure culture’ that still disgustingly pervades every nook and cranny of the nation’s consciousness around neurodivergence.

    For over a decade, the non-profit has exposed and battled the unconscionable abuse meted out against Autistic people countrywide.

    The Canary spoke to AIM CEO Emma Dalmayne about its work, and the ongoing menagerie of indefensible issues still affecting Autistic people today.

    Autistic Inclusive Meets: a grassroots group by Autistic people, for Autistic people

    Autistic Inclusive Meets (AIM) is a grassroots group that Emma co-founded in 2016. Officially, Emma and then co-director Paul Wady registered it in 2017. Its website describes how it’s staffed by:

    a team of passionate and dedicated volunteers, committed to creating a supportive and inclusive environment for autistic individuals and their families. Our team consists of a diverse group of autistic individuals who are devoted to helping autistic people to live fulfilling lives. We provide a range of services and support, including information, advice, and practical assistance to help autistic people navigate the challenges of everyday life.

    Emma is Autistic herself and her six children are all neurodivergent. She explained to the Canary that she’d started AIM in response to her Autistic youngest son, who’s now 17, getting bullied at school. The school had also been highly non-accommodating, to the point she’d decided to pull him out from mainstream education.

    She’d begun by taking him to various home education groups instead. However, she had found that she hadn’t been able to:

    find one that was as accepting of autistic children as they should be. The kids are still just as cruel.

    That’s where AIM came in:

    So I started AIM along with another home educator who’s not on board anymore. And we started off with one group, which was a sensory based group. It’s probably one of our most popular. We still run it.

    AIM now runs numerous social, play, and activity groups for neurodivergent adults and children alike. There’s a Saturday term-time football session, boxing, sensory groups, alongside special educational needs (SEN) advice drop-ins throughout the week:

    Children in a line across a goal, with a football each at their feet.

    Child and adult boxing.

    Moreover, Emma emphasised that the groups accept children without diagnosis – acknowledging the enormous barriers that persist to getting them. By contrast, she highlighted that:

    a lot of places don’t, like the National Autistic Society don’t, for instance.

    Autistic Inclusive Meets groups: a safe place for Autistic people to flourish

    This affirming, supportive environment for connection has served as a safe space for neurodivergent children to flourish in ways they often find hard elsewhere. Emma described how Autistic Inclusive Meets (AIM) has welcomed:

    parents bringing kids that they’re not sure about. But as soon as they get them there and their kid goes, they’re like, ‘oh, they go and play away from me’. And I’m like, ‘yeah, because they’re with other Autistic kids and they feel comfortable’.

    She told the Canary that:

    I think it’s important that we do exist for that, because there’s a lot of home ed groups who are still mainstream kids. So they’re still going to be as judgmental of anyone who they judge as different to them.

    So we’ve got children that are non-speaking. We’ve got children that communicate with AAC devices or they use signing, or they’re highly verbal, and they all just accept each other. They all just play alongside each other or with each other.

    But there’s never any judgment or bullying. We don’t tolerate any of that. And the parents, once they start coming, they all realise that they’re Autistic as well.

    Children play with animal figurines.

    Overall, for Emma, the groups are central to AIM’s work. Largely, this is because Autistic abuse is alarmingly prolific across the board. Only on 9 April did the BBC break a horrific account – with harrowing video evidence – of staff at a specialist school tackling and pinning a 12 year-old Autistic boy to the ground.

    But this disgusting overreach of restraint in education settings – abuse by any other name – is hardly uncommon. In 2023 for instance, the International Coalition Against Restraint and Seclusion surveyed the experiences of 560 children across England’s schools. Disturbingly, 87% of them had been subjected to restrictive practices – and 81% of those were Autistic.

    Emma detailed how she has had many parents phone up seeking help for their neurodivergent children experiencing abuse in schools:

    We had one child who’d been kicked twice between the legs so badly that he needed two operations. And the school defended the bullies by saying he shouldn’t have been in that part of the school. You get a lot of gaslighting from schools. You know, the child will say ‘he bullied me’ and they’ll be told, ‘oh, no, forget it, it’s fine’.

    Fighting Autistic abuse on all fronts, including from the National Autistic Society

    Some of these atrocious abuse incidents have even been at schools and residencies that a prominent UK autism organisation runs.

    In 2022, the National Autistic Society (NAS) was embroiled in a number of damning allegations surrounding serious safeguarding issues at its independent and academy-run schools. As Third Sector reported at the time:

    The government is investigating safety at schools run by the National Autistic Society after claims that a child was found eating a dead rat and a teacher brought in a sword…Other alleged incidents included staff being threatened with bottles and scissors.

    Moreover, the disgraceful abuse and severe neglect in this case chimed with previous incidents at NAS-run sites. Only in 2018, the infamous bullying and physical violence situation at the NAS’s Mendip House in Somerset came to light in a scathing report. As the Guardian reported, the Somerset Safeguarding Adults Board (SSAB) had detailed how:

    A whistleblower claimed one resident of Mendip House was slapped, forced to eat chillies and repeatedly thrown into a swimming pool.

    In another incident highlighted in the report, a staff member is said to have put a ribbon around a resident’s neck and ridden him “like a horse”. Concerns about a “laddish” culture were raised.

    When the home was investigated, inspectors found residents had been funding staff meals during outings and almost £10,000 had to be reimbursed.

    However, watchdog and regulator the Care Quality Commission (CQC) all but let the multi-million pound charity completely off the hook for it. Instead of prosecution, the CQC issued the NAS a mere £4,000 fixed penalty notice – and did nothing further. Of course, this is the epitome of the dismissive, dehumanising, and ableist attitude towards Autistic people that Emma was highlighting. There’s a sense in this that Autistic people’s lives are somehow lesser. Their word on events is consistently invalidated because they’re Autistic, and their lived experiences so frequently discounted.

    Unsurprisingly, it was Emma and Autistic Inclusive Meets (AIM) on the scene spearheading calls for justice in the wake of the scandal.

    Undercover investigations expose dangerous ‘cure’ culture in UK parent circles

    Emma has been at the forefront of fighting Autistic abuse since 2015. Before Autistic Inclusive Meets (AIM) came into being, appalled at the sorts of mistreatment she was witnessing in parent circles, Emma was already taking action.

    She explained to the Canary how she would “go undercover in Facebook groups” to expose parents mistreating their Autistic children. Emma reeled off a list of horrific ‘cures’ that she had found parents were forcing on them.

    There was the abhorrent ‘Miracle Mineral Solution’ – chlorine dioxide – essentially bleach, that parents would inject into their children’s rectum to remove supposed parasites ‘causing’ Autism. This highly dangerous practice causes children to eject their stomach and bowel lining – the ‘parasites’ as parents would claim to Emma on Facebook groups which they’d sickeningly “brag” they had “caught that day”.

    Emma recounted how she would:

    talk to parents who are using chlorine dioxide bleach in enemas and oral solutions on their autistic kids. And then I’d be talking to them arranging a coffee date and saying, ‘oh, yeah, my child has this reaction’, while getting their address and phone number and calling the police and social services at the same time. And the newspapers, when I first started contacting them, didn’t even believe it was happening.

    You know, they thought I was lying. But I’ve reported 12 sets of parents here in the UK for using chlorine dioxide.

    Emma often found parents completely unfazed at the disturbing array of symptoms they were bringing on in their children:

    The side effects that these kids were having, where I’d speak to parents and they’d say, ‘oh yeah, they’ve had nosebleeds, seizures, green stools, pink urine, sores, rashes, ulcers in the mouth, headaches’, just everything you can expect from being poisoned basically. They’d lose bowel lining when they were passing stools after the enemas. They’d put them in a sieve and they’d put them on a paper plate and they’d take pictures of them. They’d use a penny to show how thick they were and a ruler to show how long they were.

    This was just the tip of the iceberg however. Emma has encountered parents using turpentine on their Autistic children. In other cases, she found them turning to homeopathy, claiming any number of ‘cures’, or more baseless causes of autism:

    there was a woman who is a homeopathist and she was saying that chicken nuggets were causing autism. That was a good one.

    Others have been more sinister and alarming. Stem cell intravenous ‘treatments’ that send fluid straight into the brain, exploitative marine parks offering ‘dolphin therapy’ claiming the marine mammals sonar signals “activate brain cells”, painful Tui Na massages, these were just a few Emma highlighted she’d come across in her undercover infiltrations of parent groups online.

    In 2016, Emma had worked with the BBC to expose a Hungarian man in London – Josef Kanta – who claimed he could “kill” autism with mind training. Emma explained how his approach in her view, seemed to take influence from Scientology-type bull-baiting techniques. She explained how Kanta would:

    tell you, you have to sit still, look at him, and make no facial expression whatsoever. And then he’ll try and break you down.

    Emma had approached him feigning that she “didn’t want to be Autistic anymore”, so he would reveal his cruel ‘treatment’ to the undercover BBC team. She told the Canary how he had:

    threatened to hit the undercover journo in the BBC. He offered to punch him in the end because he wasn’t reacting the way you needed him to.

    Concerningly, Emma noted how he is “still active” today.

    Still no legislation to make cure claims illegal

    All her concerted work exposing abusive autism ‘cures’ culminated in Emma feeding into an important report that the cross-party Westminster Commission on Autism published in 2018. Parliamentarians, led by Labour MP Barry Sheerman put together A Spectrum of Harmful Interventions for Autism. This set out to expose the dodgy and abusive practices that persist for Autistic people in the UK. Notably, it found that:

    autistic people had been offered treatments such as crystal therapy, ear candles, vitamins, spiritual intervention, aromatherapy, chelation, juice plus diet, hyperbaric oxygen therapy, exorcism, stem-cell transplants, exposure therapy (including slapping), rerum, acupuncture, DAN (defeat autism now) therapy, MMS (bleach), turpentine and many more.

    Since this report, as Emma highlighted to the Canary, parents and quack clinicians have continued to promulgate some of these bunk, cruel, and dangerous ‘cures’ regardless.

    The problem, as Emma sees it, is that authorities continue to let the perpetrators off because:

    There’s this rhetoric of: Autism is a tragedy.

    She gave the example from her undercover investigations on parents using bleach:

    These poor, desperate parents, they’ve got these horrible Autistic children. What else are they meant to do but give them bleach? They’ll literally let them off and they’ll be back in the group the next day asking where they can buy more chlorine dioxide bleach.

    So ultimately, there’s little accountability for the abusers of Autistic individuals.

    Therefore, this has made Emma’s concerted, committed efforts to expose and bring them to justice all the more vital for the community.

    Autistic Inclusive Meets (AIM) has campaigned for years for a new law to make claiming a treatment or intervention as an autism ‘cure’, illegal. Emma explained how this would operate similar to the Cancer Act 1939 which does precisely this for cancer diseases. But, Emma laboured over a critical point here. And it’s one that shouldn’t need saying: “autism isn’t a disease”. Obviously, this underscored the fact that the Autistic community even require legislation to protect them from exploitative snake-oil salespeople, all the more appalling.

    Parliament has so far failed to bring any legislation on this. This has not been helped by the fact that the NAS as a leading autism charity has hedged on support for it.

    Ambitious About Autism’s love affair with abusive Applied Behaviour Analysis

    While on the surface, charities like the NAS purport to advocate for the Autistic community, some of the highest profile autism organisations actually peddle a particular set of these controversial therapies. Although these happen to be widely promoted therapies due to these big charities promoting them – the National Institute for Health and Care Excellence (NICE) actually advises against them.

    Autistic Inclusive Meets (AIM’s) campaigning has highlighted that these nonprofits therefore haven’t only a record of bullying and neglect at their facilities, but a deeply entrenched ideological culture of abuse.

    In March, AIM picketed outside a ticketed event held by PlatformX Communications (PXC) – the trading name of TalkTalk Group – to raise funds for controversial non-profit Ambitious About Autism.

    The Canary’s Steve Topple was on the ground reporting from the protest at Raffles hotel in Westminster:

     

    View this post on Instagram

     

    A post shared by Canary (@thecanaryuk)

    There, behind closed doors, actor Christopher Eccleston hosted more than 350 attendees for a night of auctions, guest donations, and technology company sponsorship. Tickets went from £650 a pop – raising hundreds of thousands of pounds to purportedly:

    go towards improving the quality of life for autistic young people while in education by providing additional assistive technology resources to learning environments across the UK.

    However, it was this “education” work that AIM was there to challenge. Notably, AIM demonstrated outside the event because Ambitious promotes a notoriously abusive ‘therapy’ for autism.

    ABA: a therapy that sounds a lot like grooming

    Applied Behaviour Analysis (ABA) is a coercive compliance-based ‘therapy’. It relies on reinforcement techniques and punitive withholding of interests and acknowledgement. Ultimately, it’s all for ‘corrective’ goals to force Autistic patients to mask their Autistic behaviours. In effect, it abuses Autistic people into silence, and out of being themselves, forcing conformity with neurotypical conventions. Put simply: forcing compliance with societally-accepted behaviours.

    Emma expressed how in practice, ABA:

    literally is just made to break the child or adult. It really is…if you’re uncomfortable, if you’re flapping and you’re happy, and you don’t need to make eye contact, you’re made to. And it takes the autonomy away from the person.

    What’s more, Emma highlighted an alarming detail about how ABA therapists operate:

    did you know that they’re brought into the home for one week before the therapy starts? And they befriend the child. They find out what the child likes so that they can use it to motivate them and use it as a reinforcer to take away and give back.

    So, Emma pointed out what this is in essence:

    And when you’ve brought someone into your house to make friends with your child, to then make them comply with treats, doesn’t that sound like grooming?

    So, what it has meant in reality has been the outright denial of Autistic people’s autonomy. Autistic patients have come away with significant trauma, and it has heightened suicide risk, endangered patients with other sometimes co-occurring conditions, all while exposing them to potential further abuse.

    The charity has long run schools and colleges that implement ABA, alongside a similarly abusive therapy, known as Positive Behaviour Support (PBS). PBS is de facto an ABA rebrand, couched in fuzzy platitudes to a ‘person-centred’ approach. In actuality, it’s clearly anything but.

    In this way, charities like the NAS and Ambitious are not simply periphery promulgators of these abusive practices. They’re instrumental to its continued prominence – effectively mainstreaming them as therapeutic tools for Autistic people.

    If Autistic Inclusive Meets had the money the big autism organisations have…

    None of this is perhaps surprising, when you consider the fact the major autism charities are disgracefully dire on Autistic representation. And where they bother at all, it has been largely down to repeated criticism from the Autistic community – not the charities themselves taking the initiative.

    From the start, by contrast, Autistic Inclusive Meets (AIM) was Autistic-led, and entirely centred in the celebration, platforming, and uplifting of the Autistic community. Its directors are all Autistic.Its work is all about giving Autistic people a voice and opportunities to thrive as themselves.

    Yet, as Emma lamented, it’s these big charities making, at best, performative and tokenistic moves at Autistic inclusion, that are:

    making hundreds of thousands.

    In fact, it’s actually significantly worse than this. These nonprofits are raking in vast incomes in the millions. Ambitious About Autism was sitting on £21m in 2023 with a near £28m expenditure that year. Meanwhile the NAS had close to £30m by the close of 2024, after spending more than £96m.

    Emma mused to the Canary that the CEOs of some of the biggest autism organisations are also taking home staggering salaries. She pointed to the CEO of Ambitious About Autism – Jolanta Lasota – on her lavish £119k pay packet.

    Crucially, as Emma put it: “they’re profiting from abuse”. Nonetheless, the funds keep flowing. Moreover, she noted that:

    If AIM had that money, the things we’d do. We’d love to have a building. We do get to use a youth club and we also use a children’s centre. But if we had our own building, we could have a sensory room and a kitchen to teach life skills, and an outdoor area. Oh, the amount of stuff we do with that money.

    However, what Emma and the AIM team do for the community on substantially less funds is already inordinately more valuable.

    AIM in Autistic people’s corner on mental health amid Labour PIP cuts

    Autistic Inclusive Meets (AIM) has campaigned relentlessly, tirelessly for Autistic and neurodivergent people’s rights.

    In the past year, AIM put together a petition calling out Child and Adolescent Mental Health Services (CAMHS) for “turning away autistic kids”. Emma’s son Damien bravely spoke out about his appalling exclusion from child mental health services to Sky News in March. Specifically, she explained how:

    During lockdown, his mental health deteriorated because I’ve done I’ve literally built this little world for him. So he’s got, you know, we run a football session of Chartwell Athletic Community Trust. We do boxing sessions. Anything that he wanted, I made.

    Then, when his mental health deteriorated further in 2024, his doctors referred him again. However, CAMHS still wouldn’t accept him as a patient. After suggesting he access safeguarding and children’s disability services – who obviously couldn’t help him with his mental health – Damien was forced to pay out of pocket for private therapy using his Personal Independence Payment (PIP).

    But as Emma highlighted, he shouldn’t have to. NHS services should be open and accessible to him, period.

    Evidently, this also throws up considerable irony amid the Labour Party government’s ‘reforms’ to PIP. Specifically, it’s doubling down on making the benefit entitlement harder to claim for certain disabled demographics – of which young people and those with mental health are particular targets.

    With so many parents coming to AIM with similar stories, Emma’s petition demanded that:

    CAMHS stop discriminating against mentally ill autistic children and teens. We are demanding they offer treatment and help instead of leaving vulnerable kids to suffer long term trauma.

    That petition now has nearly 215,000 signatures.

    Autistic Inclusive Meets ready to stand up for individuals where others aren’t

    These multitude of ways Autistic Inclusive Meets (AIM) is fighting abuse, and for Autistic people’s rights, is astonishing. However, it’s not even all that the grassroots group is doing either.

    AIM doesn’t only work on broader issues impacting Autistic people to embed change longer-term either. It also responds proactively to injustices in the here and now, and notably, in individual cases to boot.

    As with other major patient organisations, such as those for myalgic encephalomyelitis (ME), the mainstream Autism charities also regularly fail to deploy their immense resources to aid individuals in crisis. Not AIM: Emma and her bold, unwavering brainchild deeply committed to the community, have intervened in numerous instances.

    AIM was founded and is grounded in genuine love for the Autistic community and that has meant meeting Autistic people experiencing abuse wherever they’re at.

    The Canary’s Nicola Jeffery previously reported on a number of Autistic young women that the NHS had sectioned. Clinicians had weaponised the Mental Health Act against Saffron, Holly, and Megan. Each lives with Avoidant Restrictive Food Intake Disorder (ARFID) and doctors subjected all of them to traumatic forced treatments that failed to respect their autonomy, or accommodate their specific needs as Autistic patients. In some instances, they were even actively abusive towards them. So, naturally, Emma and AIM stepped up to support them and their families.

    Now, Emma reports how Saffron and Holly are out of hospital and both “doing well”. Holly has even since become an ambassador for AIM. Unfortunately, Megan’s case has been more complicated, so AIM is currently unaware of her situation. If the need arises however, it’s patently obvious the group will spring into action once again.

    These are hardly the only times Emma and AIM have done so either. There are so many examples, they are almost too numerous to list.

    Naturally, it was Emma who set up the petition for Osime Brown when the UK government despicably threatened to deport him to Jamaica.

    In February, AIM supported a family of an Autistic child with extreme sensory needs stuck in appropriate and dangerous temporary accommodation. The group applied pressure on Greenwich Council in London – who quickly rehoused them after their intervention.

    Currently, the group is running a campaign to make body cameras mandatory for care staff responsible for Autistic individuals. AIM launched it in direct response to night staff at a residential school in Kent violently abusing learning disabled and non-verbal Autistic teenager Jack.

    Unapologetically there for Autistic people: ‘because why shouldn’t it be like that?’

    Ultimately, Autistic Inclusive Meets (AIM’s) campaigning has underscored that the major autism charities flourish precisely because of the existence of persisting forms of abuse, not in spite of them. The narrative that Emma described positioning autism as a tragedy, is the basis through which these organisations solicit their gargantuan donations. In other words, tragedy pays: embedding genuine community, support, and dismantling discriminatory barriers, not so much.

    Emma expressed how the very basis of these organisations’ multi-million turnover rests on exploiting the Autistic community. It’s indisputably apparent that AIM could not be more different in that.

    AIM and Emma’s fervent love and dedication to the community shines through in everything they do. In July, AIM is hosting its annual Autistic Pride and Craft Fair in Woolwich, London. The group is also holding its first ever fair in Brighton that same month. The origins behind this event sum up AIM’s whole ethos in a nutshell:

    It was Autism Awareness Month, which I hate – it should be Autistic Acceptance Month – about four or five years ago, and I thought, ‘these bastards are raking in all this money’ – like the NAS. Loads of money, and they’re making it off Autistic people. And I thought what we need is a hall and let Autistic people make money for themselves. It’s £10 a table. Platform them and let them make their own money. And that’s what we did. That’s what they should be doing.

    AIM puts the Autistic community front and centre. They’re at the heart of the organisation – they’re at the heart of why it exists. For Emma, it’s a tale of two utterly different worlds when it comes to AIM and the prominent autism charities:

    There’s this thing at the moment, Walk for Autism, and people send a certain amount, they get a T-shirt and then they get sponsored, and then that money goes to the charity as well. And I always ask people who are sponsoring the NAS and all that, what has this charity done for you and your family?

    Can you phone them at midnight crying and someone actually talk to you and say, ‘you know what? We’ve got a group in two days. Come and have a cup of tea. Bring your child who you’ve been told is uncontrollable and you can’t take anywhere. And let’s see what happens’.

    With AIM, the answer is yes – you can. The group is there for the Autistic community in every way its small and under-resourced team can possibly be. It punches above its weight and then some.

    Emma put it poignantly, plainly:

    Because why shouldn’t it be like that?

    This is Emma’s unbending belief that speaking up, and speaking out, not speaking for or over, and simply being there for the Autistic community, is what Autistic advocacy should be all about. AIM’s work, from its groups to its campaigning, its activism to its platforming events, is all a testament to that.

    It’s AIM who will be there in the middle of the night in a crisis, the morning when you wake up concerned, at every moment that calls for people to stand up for Autistic community’s rights. AIM is unflinchingly there in the face of this ongoing abuse – so everyone who cares for the Autistic community should throw their full trust and support behind AIM too. There’s no disputing, it has more than earned it.

    Feature image and in-text images supplied/the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • The following is an open letter to Minister of State for Social Security and Disability Stephen Timms from reader Shane Brown about the Labour Party government’s DWP PIP and health-based benefit cuts.

    DWP PIP cuts: Labour’s war on disabled people

    As the Canary has previously reported, the Labour Party government has now laid down its plans for cuts to Personal Independence (PIP) and the health-based part of Universal Credit. Department for Work and Pensions (DWP) boss Liz Kendall launched its Pathways to Work: Reforming Benefits and Support to Get Britain Working green paper on 18 March.

    The paper included a suite of regressive reforms to make it harder for people to claim disability benefits like PIP. As expected, the changes it’s proposing will target certain claimants in particular, namely young, neurodivergent, learning disabled, and those with mental health disorders. Moreover, disabled people who need help with things like cutting up food, supervision, prompting, or assistance to wash, dress, or monitor their health condition, will no longer be eligible.

    Specifically, it’s increasing the number of points a person will need to score in their DWP PIP assessment to access the daily living component of the benefit. This will now require people to score four points or more in a daily living category to claim it.

    Alongside this, there’ll be cuts to out-of-work benefits like the LCWRA health-related component of Universal Credit. Once again, Labour additionally want to make this harder to claim, and all as it ramps up reassessments and conditionality requirements for doing so.

    Now, Canary reader Shane Brown has penned a scathing letter. And notably, he has addressed it to the minister supposedly responsible for standing up for disabled people, East Ham MP Stephen Timms – who so far has done anything but.

    An open letter to Stephen Timms on PIP cuts

    Dear Mr. Timms,

    Following the furore over Darren Jones and Rachel Reeves’s comparison of the forthcoming disability benefit cuts to “pocket money”, it is with astonishment that I see that you have referred to being unable to cut up food, needing assistance to wash or shower, and needing supervision to use the toilet as “low level functional” problems that can be dealt with by “small interventions” on April 7 in your reply to a question by Richard Burgon MP. At the same time, you defended the decision to change the eligibility for the daily living element of DWP PIP to require four points in at least one category.

    The problem with the approach to disability benefits that you, your department, the chancellor, and the prime minister are taking, is that you appear to be wilfully using provocative language, misinformation, and downright lies in order to persuade the public at large that those of us with problems that are spread over a wide range of daily tasks, are somehow not disabled enough to be worthy of a benefit.

    With this in mind, I have to ask the question of why you have only come to this conclusion since you have been in the party of government. After all, on 8 June 2016, you voted against reductions in disability benefits when you were in opposition. Perhaps you would be good enough to tell us what has changed your mind?

    Those ‘low level’ inconveniences: essential to daily living

    But let us return to those “low level” problems, those tiny inconveniences, of not being able to wash, cut food, or go to the toilet. I am sure that I don’t have to remind you that the dozen questions on the DWP PIP form are there for the purpose of deciding whether we should get the benefit or not. Those questions, and the answers we give to them, are not the sum of the problems we have to deal with on a daily basis.

    If we need help with those basic things, it is highly likely that it is because of pain, discomfort, and restricted movement. That does not start and end with dressing and washing. It is there for every moment of every day, from the time we get up in the morning until the time we go to bed at night. What’s more, you appear to ignore the costs associated with these “low level” problems.

    Let us look at just one example. If we can only use a microwave to prepare meals, one would assume that means eating ready meals. Two ready meals a day is around £8-10. We know that cooking from scratch is considerably cheaper than that. So, yes, using the microwave is a “small intervention”, but it costs anyone who does that every day probably 50% more to eat than those who don’t have to.

    That’s an extra £28 a week for that “small intervention” alone. But you don’t want PIP to cover that? Why? THAT is what DWP PIP is there for – to pay for the things that cost us more because we are disabled.

    Benefit cuts will not make people ‘miraculously fit and able to go to work’

    I might have some respect for your position if I thought that it was one that you actually believe in, but your previous voting record suggest that it isn’t. I have psoriatic arthritis. I am in pain from the moment I get up in the morning until the moment I go to bed. I suffer from fatigue, as many do who have inflammatory conditions of this kind.

    Beyond that, I’m taking extra strong codeine three or four times a day that makes my brain foggy and makes me generally tired. And you want me – and others like me – to go to work. My biologic medication costs the NHS £650 every four weeks. Do you really think I would be given it if my condition wasn’t severe?

    I’ve been told I shouldn’t work. But you say I should and, either way, you’re going to take my DWP PIP away from me because I’m just not disabled enough. Oh, and when you take that, you’re also going to take my LCWRA element of Universal Credit (UC) when the Work Capability Assessment is scrapped, because it’s somehow going to cause a “behavioural change” (according to Keir Starmer), and I’ll be miraculously fit and able to go to work.

    What’s more, you are not even allowing those of us with mobility element of PIP to get that higher element of UC. Are you REALLY of the belief that those who can’t walk more than one metre are not disabled enough to get the health element of UC?

    Labour’s DWP PIP plans are downright ‘patronising, pathetic, and puerile’

    What you are suggesting is diabolical. These DWP PIP changes have no basis in reality. The disabled community knows this. The medical profession know this. And the worst of it all is that YOU know this. So does Liz Kendall, and Darren Jones, and Rachel Reeves, and Keir Starmer, and every member of your party who doesn’t have the guts to stand up for those of us that need their help right now.

    What you are suggesting isn’t just diabolical, it’s insulting. It is patronising, pathetic, and puerile, and it is trivialising what we, the disabled community, have to go through every day of our lives, and through no fault of our own.

    How dare you tell us that what we have are merely “multiple low-level functioning needs” that need a “small intervention”, just because your government has decided that we are collateral damage for your budgetary failures.

    Your position is no better than that of Boris Johnson who thought that Covid was “nature’s way of dealing with old people”. In the future, people will look back and view what you are doing as the Labour government’s way of ‘dealing with the disabled’. The results will be the same. People will die.

    I look forward to your reply.

    Yours faithfully,

    S L Brown.

    Featured image via the Canary

    By The Canary

    This post was originally published on Canary.

  • Richard Burgon, the Labour MP for Leeds East, is at the forefront of a campaign that is stirring significant public interest and debate regarding proposed Department for Work and Pensions (DWP) cuts to disability support like Personal Independence Payment (PIP) and Universal Credit.

    DWP PIP cuts – or a wealth tax…?

    Burgon has initiated a petition titled ‘Tax Wealth – Don’t Cut Disability Support,’ which has already attracted over 40,000 signatures, indicating robust support from the public. You can sign the petition here.

    The crux of the campaign relates to the government’s current proposals that aim to tighten eligibility for DWP PIP, which serves as the principal disability benefit across England, Wales, and Northern Ireland.

    Additionally, the plans include reducing the Universal Credit health element. These proposed changes have been met with widespread disgust from various quarters, particularly from those who assert that the most vulnerable members of society should not bear the financial brunt of a crisis that they did not instigate.

    Speaking to Left Foot Forward, Burgon emphasised the need for the Labour Party to rethink its cuts to both DWP PIP and Universal Credit. He stated:

    We shouldn’t cut a single penny in support for disabled people – we should tax the wealthiest instead.

    The petition argues that implementing a modest 2% annual tax on assets exceeding £10 million could generate as much as £24 billion annually. This figure dwarfs the £5 billion the government claims it would save through the proposed cuts to disability benefits.

    Overarching opposition

    The campaign’s petition articulates a poignant argument that:

    slashing disability benefits instead of taxing extreme wealth is a political choice—and it is the wrong choice.

    Burgon, who has previously held a shadow ministerial role under Jeremy Corbyn, expresses a strong commitment to advocating for the rights of disabled individuals and preserving their vital support systems.

    As discussions around welfare reform continue, a vote on these proposed DWP PIP and Universal Credit changes is anticipated as soon as next month.

    In a related development, it has been reported by Labour List that at least 27 MPs have publicly committed to opposing the DWP PIP and Universal Credit cuts. However, these MPs may face pressure from Labour whips to conform and back down before the government introduces a bill that would revise the PIP points system and eliminate the health element from universal credit for new claims, scheduled for May.

    The campaign against the cruel cuts to DWP PIP and Universal Credit has received a significant boost from the Fire Brigades Union, whose general secretary, Steve Wright, has become the first leader of a Labour-affiliated trade union to explicitly urge MPs to resist these proposed reforms.

    Wright expressed his concerns in an interview with the BBC, stating:

    The most vulnerable and poorest in society are being asked to pay for a crisis they didn’t cause. I don’t believe that is why people are involved in the Labour movement.

    He further warned that such DWP PIP cuts could lead to the “normalisation of the cost of living crisis,” a trend he believes society should vehemently reject.

    Don’t cut DWP PIP

    The situation serves to highlight an ongoing struggle between government austerity measures and the rights of disabled individuals and those reliant on social support like DWP PIP. As pressure mounts on the government for a more equitable approach to funding, the voices of the advocates, claimants, and trade union leaders continue to grow louder, demanding fair treatment and highlighting a growing disparity in the accountability of wealth distribution in the UK.

    With government proposals aimed at reforming crucial welfare support on a fast track, the coming weeks are poised to be decisive in shaping the future for many disabled and non-working people across the nation.

    The collective stance of numerous MPs, trade unions, and advocacy groups underscores the importance of accessibility and support for society’s most vulnerable members in an era rife with financial uncertainty.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • Richard Burgon, MP for Leeds East, has asked questions about Department for Work and Pensions (DWP) plans for people on Personal Independence Payments (PIP) and received an outrageous answer. As the Canary’s most recent coverage has demonstrated, Labour have shown nothing but contempt for disabled people when it comes to policy on disability benefits. The announcement of these policies has caused untold distress for disabled people. And, to add insult onto injury, Labour’s insistence on overhauling DWP PIP is pushing up against a 0% fraud rate with almost a 50% rejection rate for applicants.

    Now, the response of Stephen Timms, Minister of State for Social Security and Disability, on DWP PIP restrictions has shown just how terrifying these proposed reforms are for disabled people.

    DWP PIP restrictions

    In a written question Burgon asked why people with the following needs are to no longer be eligible for DWP PIP:

     (a) assistance to be able to cut up food

    (b) supervision or prompting to be able to wash or bathe

    (c) assistance to be able to wash either their hair or body below the waist

    (d) assistance to be able to get in or out of a bath or shower

    (e) supervision or prompting to be able to manage toilet needs

    (f) assistance to be able to dress or undress their lower body

    (g) supervision, prompting or assistance to be able to manage medication and, or, to be able to monitor a health condition.

    Before we get to Timms’ response – let’s establish something. The needs Burgon is describing form the basic requirements for dignity in any person’s life. They’re not extra requirements – they’re the absolute basic fundamentals of existing as a person. They are a right.

    The reason we’re at pains to point this out is because the media reporting of disability has been so abhorrent that it is simply not a given that disabled people who require support with eating and cleaning themselves are full human beings with the same right to dignity and respect as anybody else.

    What was the response?

    When Timms’ response to Burgon’s question did come, it showed just how callous and cruel Labour’s approach to disabled people is. Timms said:

    A high number of people get PIP by having multiple but low-level functional needs across several activities. These could individually be managed with small interventions or the addition of aids or appliances. This change will focus PIP more on those with the greatest needs, ensuring those who are unable to complete activities at all, or who require more help from others to complete them, still get support.

    Here, Timms is saying that of the various needs Burgon listed in his question, it is the Labour party’s belief that they could be considered “low-level functional needs.” That includes cutting up food, washing your hair and body, and using the toilet.

    Timms is instead saying that these kinds of needs won’t qualify people for DWP PIP anymore. Instead, these needs will be “be managed with small interventions or the addition of aids or appliances.”

    Timms didn’t clarify precisely which magical aids and appliances can be used for the above needs without money being spent. His assertion that “this change will focus DWP PIP more on those with the greatest needs” is an incalculably cruel and ignorant assessment of what disabled people’s lives are actually like.

    And, on social media Burgon was similarly blunt:

    I asked the Government why people will no longer get PIP who need help to go to the toilet, cut up food or wash themselves.

    The response is appalling. It claims these disabled people just need “small interventions or the addition of aids or appliances.”

    No, they need PIP!

    What’s the point of DWP PIP?

    In parliament, Burgon made another important point:

    The purpose of the daily living component is to cover the cost of extra help needed with everyday tasks such as washing, eating, using the toilet and getting dressed, but the Secretary of State’s proposal to tighten the eligibility criteria could mean that even those who are assessed as needing help on every criterion may not be entitled to PIP.

    Given DWP PIP has a 0% fraud rate, and almost half of claimants have their applications rejected nothing in the data points to any kind of fraud or misuse of PIP on the part of applicants. PIP isn’t means tested, and isn’t a benefit designed to get people into work. It is designed to assist people with the additional cost of living whilst disabled.

    Timms characterisation of the needs Burgon listed as “low level” is an absolute disgrace. Nobody, never mind a minister for disabilities, should be making such embarrassing and ignorant assertions. People who struggle to wash and feed themselves need the funds to be able to survive. Disabled people aren’t off on a jolly – though fuck knows we could do with one – using DWP PIP.

    There is an answer

    Burgon wasn’t done there, though. In another response in parliament he said:

    Making cuts instead of taxing wealth is a political choice, and taking away the personal independence payments from so many disabled people is an especially cruel choice.

    A disabled person who cannot cut up their own food without assistance, cannot go to the toilet without assistance and cannot wash themselves without assistance will lose their personal independence payment.

    Have not the Government taken the easy option of cutting support for disabled people rather than the braver option, which would be to tax the wealthiest through a wealth tax?

    As ever, disabled people are at the sharp end of government reforms. Labour are trying to look like they’re tough on fraud, and somehow a conservative option in a red tie. The reality is that their plans for DWP PIP will make life immeasurably difficult for disabled people. These plans mean disabled people will die without the basic support they need for “low-level functions.”

    Labour could have chosen to tax the unfathomably wealthy. Instead, they’re using disabled people as an easy target.

    Featured image via the Canary

    By Maryam Jameela

    This post was originally published on Canary.

  • Content warning: This article contains personal accounts of child sexual abuse and domestic abuse that some readers might find distressing. 

    In Poland, a patient can’t even get a diagnosis of a devastating and debilitating disease, despite it rendering him bed-bound for the past several years. This is because, there, the healthcare system doesn’t recognise the chronic illness in question – severe myalgic encephalomyelitis (ME/CFS) – at all.

    As a result of this, to date, he has been unable to access Polish social security for support. This has left him in the ‘care’ of his abusive mother. Now, he is urgently seeking a Poland-based advocate to help him navigate the country’s medical and social support systems. With their help, he hopes to acquire the financial means for a local care-giver, and gain independence away from her abuse.

    Karol: Severe ME/CFS patient in Poland

    Myalgic encephalomyelitis (ME/CFS) is a chronic systemic neuroimmune disease which affects nearly every system in the body. It causes debilitating symptoms. These typically include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions.

    In particular, post-exertional-malaise (PEM) is the hallmark feature of ME. This involves a disproportionate worsening of other symptoms after even minimal physical, social, mental, or emotional exertion.

    Karol – who lives in Poland – developed ME at the age of ten. This was after contracting a serious “stomach bug” for five days. He hasn’t been able to confirm the virus, but he remembers that the sickness, characterised by fever and severe gastrointestinal problems, made him feel “so exhausted”, that he “thought he was gonna die”. He now wonders if it might have been an Epstein-Barr infection – a common viral trigger for ME.

    After this sickness episode, his undiagnosed ME was mild at first. However, at the age of 13, his symptoms started getting worse:

    my head started, went kind of lax, started bobbing, couldn’t hold it up straight, basically. And at the same time – migraine with aura, really bad headache and brain fog.

    The symptoms Karol described are typical of a common ME co-morbidity known as craniocervical instability (CCI). This involves increased mobility at certain junctions in the neck.

    Now, age 28, Karol lives with severe ME. For several years, he has been entirely bedbound and functionally blind. The latter is down to his extreme light sensitivity – meaning that he must wear an eye-mask 24/7 to block out the light, which otherwise causes him intense headaches and agonising pain.

    At least 25% of people live with severe ME. In these cases, people living severe ME are mostly, if not entirely permanently bed-bound or hospitalised. On top of this, they are often unable to digest food, communicate, or process information and are fully dependent on others for their care.

    Karol also lives with Coeliac disease and postural orthostatic tachycardia syndrome (POTS), and chronic autoimmune polyneuropathy. The latter is a neuromuscular disorder in which the body’s immune system attacks the peripheral nervous system. He also has small fiber polyneuropathy (SFN). It involves damage to the small nerve fibers outside the central nervous system that regulate autonomic functions such as heart rate and blood pressure. It is common in both Coeliac disease and POTS.

    No recognition for ME/CFS in Poland

    Throughout all this time, Karol has been unable to get a formal diagnosis for his severe ME/CFS, and has only started getting diagnoses for the majority of the other chronic health conditions he clearly lives with as he has become progressively ill. However, a majority of clinicians still do not recognise these regardless. He told the Canary that he first learned of ME himself at the age of 17. However, he soon found out that Poland’s medical system does not have it listed as an official disease entity:

    when they check out their medical system, whatever they use for the information, I told them ‘encefalopatia mialgiczna’, which is a literal translation of myalgic encephalomyelitis, and they couldn’t find that in their system. So they think for days that I’m bringing up this disease that doesn’t even exist, but they only tell that to me much later. So they think I’m entirely cuckoo.

    What this has meant in practice for Karol has been a catalogue of catastrophic care at the hands of Poland’s medical professionals.

    When Karol initially approached the hospital for answers, he explained that clinicians had entirely dismissed him, and put it down to the serious bullying he was experiencing at school. A child there had been beating him, but nobody was intervening to stop this. It meant clinicians passed off his symptoms as psychological, suggesting he had agoraphobia on the basis of him:

    not wanting to leave the house and not wanting to go to school.

    Consequently, instead of taking his debilitating symptoms seriously, they committed him to a psychiatric ward for three and half months.

    They threatened this again at the age of 23 when he became dangerously unable to eat. He went into hospital requiring a jejunostomy tube (J-tube) – a feeding tube directly into the small intestine – for nutrition:

    I end up in the hospital because my weight is so low – I believe I was 43 kilos and I’m a tall guy, 196 centimetres tall. So I end up in the hospital and my weight was so low because after the stomach reduction and with the ME, I couldn’t get enough food in.

    The hospital ultimately refused to set up the J-tube, and sent him home without any help.

    Atrocious ableist abuse from hospital staff

    Like many arrogant and uninformed medical professionals overseeing severe ME/CFS patients, his healthcare team was convinced it had a psychological basis. Often, clinicians erroneously apply anorexia or other eating disorder diagnoses to severe ME patients. Unsurprisingly then, this is exactly what doctors did to Karol as well.

    Of course, this is palpable nonsense in terms of Karol’s inability to orally consume adequate nutrition. This would have come down to a combination of gastrointestinal causes and other symptoms restricting his ability to eat. People with severe ME often don’t have the physical energy to do so, and are suffering a suite of pain and gastro-intestinal symptoms, and dysphagia (difficulty swallowing). Meanwhile, his POTS would have inhibited him sitting upright. It’s also likely Karol could have a number of undiagnosed commonly co-occuring conditions affecting all this further.

    And during this hospital stay, the chief nurse leaned into this dangerous psychologisation of his physiological illnesses. While in charge of his care, she verbally and medically abused him.

    Karol told the Canary how she would raise his regularly mechanized bed:

    just because I didn’t want it to be, just because I wanted it to be flat, she would put it up.

    Forcing his bed up and sometimes into “almost” sitting position would trigger episodes of his POTS.

    On another shocking occasion, she removed Karol’s eye-mask while he was signing some papers. He explained that:

    So, they gave me a pen and I started writing my name and she made some unpleasant noise, like I guess my writing was crooked or something. And this woman just took my mask off. And I experienced such pain, such headache.

    I was screaming. I turned my face towards the bed. I begged them to put it back on. They wouldn’t. And then eventually they did.

    For Karol, with his extreme light sensitivity, this amounts to nothing less than atrocious ableist abuse.

    Gaslighting, disbelief, and domestic abuse

    All the while, Karol’s health has only continued to deteriorate across the board. And this has left him not only vulnerable to the healthcare system’s torturous treatment, but also abuse from his primary care-giver: his mother.

    From the start, Karol’s mum denied and dismissed Karol’s chronic illnesses. He told the Canary that early on, she had treated his health like it was “really inconvenient”. When he first started getting tests at the hospital, she spent:

    that entire time anti-advocating for me, saying I’m insane and that I’m probably just making it all up to get out of school.

    His mum’s denial of his health conditions continued across more than a hundred doctors visits between the ages of 13 and 18. Karol told the Canary that:

    It’s all kind of like a script where we go there and my mum is anti-advocating, saying I’m crazy and psychologically ill. And this kind of functions in the way of just this constant humiliation where the doctor is the authority figure here. And my mum does let me go there and takes me there because she’s like, well, if you could prove it that you’re actually ill, then, you know, by getting the doctor to side with you and say that there is a disease like that, then maybe things would start happening for you.

    But since you can’t, you know, it’s just this constant psychological torture for me. And I feel like I have to keep submitting myself to this because, you know, how else am I going to get help? And I was ill, I couldn’t function properly with life at school. I was very tired.

    He described how his mum put him in a “constant barrage of situations” gaslighting him to:

    believe that I’m just a bad fella, you know, a bad person.

    Severe ME has meant no escape from sexual abuse

    However, the psychological abuse was only part of it. Karol is a survivor of child sexual abuse (CSA). Abhorrently, his mum was the perpetrator, and Karol told the Canary that she has continued to abuse him into adulthood. Horrendously, she had restarted abusing him when he became bed-bound with severe ME/CFS:

    At that time, my mum was beating me again, just like in childhood, and hurting me, touching. Basically, she started doing that again when I became bed-bound, but she was abusive all along.

    With Karol’s consent, his friend detailed more about the disgusting abuse his mother regularly subjects him to:

    She pulls at his hair, sits on his feet (he has polyneuropathy so this is very painful), will lift his blanket to grab his testicles and pull on them, will turn off the heat in his room, and will withhold his medication.

    Karol has Celiac disease, and his mom weaponizes this against him by refusing to let him adhere to a gluten-free diet.

    Of course, this has led to serious health complications for Karol, as his friend described:

    This has led it to progress to the point where his bowels are very damaged, he doesn’t absorb nutrients nearly as well, he has rectal bleeding, and has Dermatitis Herpetiformis (chronic itchy skin rashes made of bumps and blisters) all over his body. He says he currently has around 30 holes in his skin because of this, whereas before when he could adhere to a gluten-free diet, he had only one or zero at a time.

    Obviously, the likely intestinal damage from his forced gluten diet also goes some way to putting his weight loss and malnutrition in context too.

    Karol bravely opened up about all this because in his own words:

    abuse feeds itself on the silence.

    Dangers for disabled people unable to leave DV

    Karol isn’t the first person living with severe ME/CFS trapped in an abusive situation that the Canary has reported on. In May 2024, we first spoke to severe ME patient Anna who lives in Australia, trapped in an abusive household. As it stands, Anna’s family still continues to mete out abuse, and neglect her basic needs on a daily basis.

    Then, in September, 26 year-old Katiana told the Canary about her parent’s psychological abuse, gaslighting, and denial of her severe ME. She is also still living with her abusive parents, because no in-country help has been forthcoming since.

    Research has shown that disabled people are more likely to experience domestic abuse than non-disabled people. For example, UK Office for National Statistics data found that rates of domestic abuse from 2019 to 2020 were nearly three times higher for disabled people.

    What’s more, disabled people can have added hurdles getting away from their abusers. For one, their dependency for daily care means that without alternative care support waiting, they are unable to leave.

    Moreover, disabled survivors of domestic abuse often face a number of additional barriers getting out of abuse. This includes for instance, access to transport, finances, and safe, supported accommodation.

    All this once again applies to Karol. Without formal recognition of his severe ME and other conditions, Karol has not been able to access Poland’s social security system. And without the financial means to employ a new carer, he can’t get out of this abusive situation either.

    Karol needs an advocate for ME/CFS in Poland – can you help?

    Right now, Karol feels his only recourse is to find an advocate. It’s why he reached out to the Canary with his story. His friend explained to the Canary that while:

    Karol has online friends from around the world trying to help him, but without proximity to him, the requisite language skills, or knowledge of Polish support systems, we are mostly powerless to help.

    So, ideally, he hopes that someone will come forward to help him navigate the Polish government, medical, and social security systems. He lives in the Natolin district of Warsaw, so is looking for a caring advocate based in Warsaw. However, he would be grateful for support from anyone in Poland, or who understands Poland’s various government and healthcare infrastructure.

    If you are someone, or know of a person matching the above description who can help Karol, please reach out to him at his email address: kopczynskikarol1@gmail.com

    It’s appalling that in 2025, a healthcare system, anywhere, still doesn’t recognise ME/CFS as a formal diagnosis. Moreso given that the World Health Organization (WHO) has classified it as a neurological disease since 1969.

    Of course, Poland is hardly the only country playing catch-up. Plenty of other healthcare systems across the planet continue to trivialise the disease, and push harmful treatments on patients.

    Moreover, diagnosis for many people living with severe ME has often made little difference – as evidenced by cases of severe ME patients in the UK and elsewhere. Clinicians the world over continue to dismiss, disbelieve, and neglect severe ME patients and those with related chronic illnesses. Overall, psychologisation persists – and that’s tragically the case wherever in the world a person with ME happens to be.

    What’s more, as Karol’s situation demonstrates, medical abuse and gaslighting invariably feeds domestic familial abuse through a vicious cycle of psychiatric stigma. Karol’s story is another harrowing reminder that it’s not just the chronic illness itself, or the lack of curative or therapeutic treatment putting severe ME patient lives at extreme risk. Sometimes, abusive family, friends, or care-givers are doing this too. And an uncaring state and healthcare system that leaves people with nowhere else to turn is often invariably, largely to blame.

    Featured image supplied

    By Hannah Sharland

    This post was originally published on Canary.

  • A chronically ill, disability rights activist has launched a vital new petition. It’s to urge the Labour Party government to “halt” the Department for Work and Pensions (DWP) brutal benefits cuts to disabled people unable to work.

    What’s more, it’s with some irony that the call to stop these cruel cuts comes straight from the heart of none other than DWP boss Liz Kendall’s own constituency. That is, the chronically ill activist behind the petition is Kendall’s constituent. And, she fears – like countless others – that the work and pensions secretary’s plans will strip her of the disability benefits she relies on.

    DWP benefit cuts: a vital new petition

    In March, DWP boss Liz Kendall finally laid out the government’s sweeping catalogue of plans to ‘reform’ disability and health-related income-based benefits. It set this out in its Pathways to Work: Reforming Benefits and Support to Get Britain Working green paper.

    Broadly, this made for a callous combination of catastrophic cuts that will harm chronically ill and disabled claimants.

    The government is now consulting on some of these DWP plans until 30 June. You can respond to this here. Scandalously however, it isn’t consulting on many of its most dangerous proposals. Of course, this is those that will hit chronically ill and disabled people hardest.

    So now, one chronically ill disability rights activists has taken action against the government’s atrocious plans.

    ‘Support, not hardship and deprivation’

    Chronically ill and disabled Leicester West resident Abi Broomfield has started a parliamentary petition.

    This demands that the Labour Party government stop the cuts it has set out. In particular, Broomfield has honed in on some of the worst, most damaging proposals. Notably, these are largely cuts that will leave chronically ill and disabled people unable to work worse off. Or, it will otherwise deny people benefit entitlements entirely.

    Notably, the petition reads:

    We want the Government to halt all planned benefit cuts for disabled people unable to work. Instead of reducing benefits, we want them to rise in line with inflation. We want support, not hardship and deprivation, for those who cannot work.

    We feel that disabled people who cannot work should not have their benefits cut. Acquired Disabilities can end careers, and we feel that those who previously contributed to tax deserve support. We also believe that people born Disabled need steady support without cuts.

    Alarmingly, the government’s own Impact Assessment has already revealed the devastating impacts of these cuts on vulnerable populations. For households with disabled members, this is arguably the most stark.

    By 2029/30, 3.2 million families (some current, some future claimants) who will lose average of £1,720 per year from DWP benefits in real terms. Of these, a staggering 96% (3.1 million) have at least one family member who is disabled. This equates to 20% of all households with disabled family member.

    Households with at least one disabled family member also lose £100 more on average per year than households without a disabled family member. But by comparison, just 1.8 million (48% of total affected) households with a disabled family member purportedly gain from the changes. It means that just 12% of households with disabled family members benefit from the changes.

    Disabled people ‘should not be punished for being unable to work’

    To top it all off, the government has manipulated its own figures. Specifically, it has deliberately misrepresented the number its cuts will push into poverty. So while it has estimated that it will throw 250,000 – including 50,000 children – into poverty, the reality is likely much higher.

    The assessment doesn’t differentiate how many of these are chronically ill and disabled people unable to work. Nonetheless, it’s likely many of those losing out will be those in the LCWRA category. In other words, it will be people who can’t work.

    None of this is to even mention the compounding impacts of fourteen years of Conservative class war on welfare. Nor does it take into account repeated below inflation benefit rises and the lingering after-effects of the partly pandemic-induced cost of living crisis. So, as the petition continues:

    We feel the pandemic widened the gap between current financial support and the extra cost of living for Disabled people; these proposed cuts will worsen this. We think forcing people to work will strain the fragile NHS and that Disabled people should not be punished for being unable to work.

    DWP cuts will only cause more harm and deaths

    Broomfield told the Canary what compelled her to set up the DWP-based petition. Firstly, she highlighted that:

    Not everyone can work, and this Labour government is penalising Disabled people because of this very fact.

    And notably, the government’s plans will directly affect her too:

    As it currently stands, I, along with hundreds of thousands of others, will be losing my PIP entitlement. I rely on mine to help pay for some of the additional costs I face due to my disabilities.

    Moreover, Broomfield spelled out the brutal reality of these DWP cuts as entirely contrary to Labour’s ‘back-to-work’ claims:

    These cuts won’t get Disabled people into work; instead, they will cause serious physical and mental harm, and even deaths within our community. Plus, it’s going to seriously damage an already vulnerable NHS and care sector as Disabled people facing these cuts will inevitably have to rely on them more.

    On top of this, Broomfield took the decision to launch the petition because the government has left chronically ill and disabled people with no other participatory democratic recourse:

    Another crucial reason why I started this petition is that the government is ignoring us and has conducted little to no research about the benefits they’re cutting and the devastating outcomes this will cause. As parliamentary petitions are the only ones that the government has a legal obligation to respond to and listen to, I’ve gone down this route.

    Plus, Broomfield has the unfortunate disadvantage of living in the constituency of one particular parliamentary representative: Liz Kendall. Needless to say, she’s one MP who won’t be convinced to challenge the cuts:

    I want to challenge this government, especially my own MP Liz Kendall, to not enforce these Draconian measures but to actually uplift Disability benefits to match the actual real-life costs associated with being Disabled.

    Sign the petition and send the Labour Party the message it can’t get away with it

    Now, the petition needs as many people as possible to sign it. Currently, the petition is just shy of 1,000 signatures. At 10,000, the government must issue a response. If more than 100,000 people sign it, the government will have to consider it for a debate in parliament.

    Together then, signees can send a strong, uncompromising message to the Labour Party government. In no uncertain terms, they can tell it that the public overwhelmingly opposes its callous DWP cuts.

    To date, Labour ministers’ response to the outcry hasn’t engendered much to be hopeful about. So far, they have only exhibited the government’s glaring wilful obtuseness.

    However, the petition could at least expose this government for the scapegoating neoliberal charlatan it really is. It will ensure that never again can the Labour Party claim to listen to and champion the rights of chronically ill and disabled communities across the UK.

    You can add your name to the petition here.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • A new petition is making waves as it calls on the Department for Work and Pensions (DWP) to update the Personal Independence Payment (PIP) application form to include important information about the high success rate of appeals.

    This comes at a time when many disabled people are grappling with an intricately complex application process, known for its notoriously low approval rates.

    You can sign the petition here.

    DWP PIP: a shambles of a process for disabled people

    Currently, just over half of all PIP applications are successful, which has resulted in widespread frustration among those in need of support. According to the most recent data, only 46,803 appeals were cleared at tribunal hearings in the financial year 2023/24, with a staggering 32,222 (69%) of these appeals decided in favour of the claimants.

    This statistic underscores a crucial point that claimants are not often made aware of: once a decision is contested, the odds significantly swing in their favour.

    Brian Donnelly, the individual behind the petition, has been vocal about the necessity of this change.

    Speaking to the Mirror, he stated:

    We believe the Government should make it clear on the Personal Independence Payment (PIP) application form that 69% of people who appealed their PIP decision in 2023/24 won at a tribunal.

    He highlighted the importance of transparency, urging the DWP to actively inform PIP applicants about this information right from the start of their application journey.

    A fraught path

    This is because once their application is denied, prospective DWP PIP recipients have a challenging path ahead.

    The process requires applicants to carefully follow guidelines set out in their decision letters, which will indicate whether they can challenge the initial decision. The first step involves a “mandatory reconsideration,” which must be requested within one month of receiving the decision.

    While this request does not incur any fees, it often demands compilation of extensive and sometimes burdensome documentation, such as fresh medical evidence, specialist reports, and financial statements.

    Moreover, the average snowball effect means claimants are often left waiting around 25 weeks for their DWP PIP appeal cases to be heard. Many disabled people experiencing difficulties can find themselves in a seemingly unending cycle of uncertainty and emotional distress while they wait for those vital appeals to be resolved.

    If claimants remain unsatisfied with the outcome of the mandatory reconsideration, they can escalate their case to the Social Security and Child Support Tribunal, a court that operates independently from the government.

    This adds another layer of hope for claimants, as the tribunal is expected to evaluate cases fairly and impartially. However, applicants face the same timer of needing to appeal within a month of the mandatory reconsideration notice, leaving many feeling overwhelmed.

    DWP PIP: will the government listen?

    Disabled people making these claims are already navigating significant challenges in their daily lives due to their impairments or chronic illnesses. The rigid processes and high stakes associated with DWP PIP applications reflect a system that has left many feeling devalued.

    With the number of claimants encountering difficulties on the rise, this petition seeks to highlight that despite initial setbacks, success is achievable. Moreover, it comes as the DWP is planning on making cruel cuts to PIP and Universal Credit.

    The call for essential data to be included in the DWP PIP application process serves not only to equip disabled people with valuable information but also represents a broader demand for transparency and fairness within a welfare system that many view as failing them.

    As the wait for the government’s response continues, one can only hope that the voices of claimants and their advocates will resonate louder in the halls of power.

    Featured image via the Canary

    By The Canary

    This post was originally published on Canary.

  • When it comes to BBC coverage of assisted suicide – or anything, really – the foremost UK public broadcaster should rebrand itself the British Bias Corporation and be done with it. This is because, any claims to impartiality the BBC could claim to uphold, has been well and truly demolished once again. This time, it’s over its news site’s stacked coverage of Kim Leadbeater’s assisted suicide bill.

    BBC bias on assisted suicide

    Journalist Dan Hitchens dug into the BBC’s output across its news site in the last six months. He looked at the period between October 2024, and the end of March 2025. Specifically, he analysed news stories for their inclusion of different representatives and groups.

    And what he found was blatant bias in favour of the pro-assisted suicide lobby:

    The “single campaign group” Hitchens flagged is none other than the opaquely funded Dignity in Dying. The organisation has spearheaded lobbying efforts to push MPs to back the bill in parliament.

    Ahead of the vote at second reading in the House of Commons, the group spent vast sums peddling the bill to the public on social media.

    So, Hitchens essentially revealed that the BBC has platformed the lobby group in a whopping nearly 60% of its stories on the bill.

    By comparison, it has given over its coverage to groups/individuals against assisted suicide in only a third of its articles.

    If that weren’t bad enough, Hitchens noted the pitiful excuse the BBC had previously made for this staggering disparity:

    In short, to the BBC, it doesn’t give a shit about amplifying the voices of those the assisted suicide bill could impact most. As the Canary has consistently articulated, this will be chronically ill and disabled people.

    BBC bias: we’ve been here before, we’ll be here again

    Of course, none of this is out of step with the public broadcaster that’s anything but ‘impartial’ in reality. The notion that the BBC is a trustworthy, non-partisan source of information is about as believable now as a Labour cabinet minister refusing to drink to a round of “Never have I ever taken vast donations from sleazebag corporate lobbyists”.

    What it passes off as impartiality is really just a complicit client media. It unabashedly maintains the status quo of the establishment and corporate capitalist classes. That is, the BBC has long laundered the agendas and reputations of the neoliberal right. In doing this, it has kept them soundly in power. Political editor, Boris Johnson suck-up, and all-round slimy Conservative grifter Laura Kuenssberg is a case and point of precisely this.

    Throughout Israel’s abhorrent genocide and ethnic cleansing in Gaza, its disgusting capitulation to the war-criminal-led state has been nothing if not obvious and relentless.

    So the BBC really is no stranger to laying cover for the perpetrators of unconscionable deaths either. Be it the Covid fatal “let it rip” legacy of Tory administration past, or genocidal Israel, it’s a blatant vehicle for this type of establishment-sustaining propaganda. In that sense then, its overt lean into the lead org of the assisted suicide lobby, is arguably right at home.

    Not its first time promoting assisted suicide with DiD’s help

    Nor is this the BBC’s only foray into sanitising assisted suicide either. Dignity in Dying’s own annual accounts detail how in 2023, it:

    provided consultancy support on Casualty and Coronation Street storylines

    That is, the lobby group input into two of the broadcaster’s most popular programmes. As the Telegraph highlighted:

    In September last year, a major plot line in BBC medical drama Casualty revolved around Jan Jenning, a paramedic played by Di Botcher, helping Gethin West – a Motor Neurone Disease (MND) sufferer portrayed by Robert Pugh – to end his life in Switzerland.

    Two months earlier, Coronation Street showed Paul Foreman, another MND sufferer, asking his boyfriend Billy Mayhew, an archdeacon, to help him die.

    Of course, the effect of it normalising assisted suicide in two prominent soaps, cannot be overstated. These stories promote assisted death, over provision of genuine support assisting people to live.

    Now, Hitchens has blown open the BBC’s broadscale bias over this once again. Who it chooses to amplify speaks volumes. This is especially the case when it has put out this coverage amid parliamentary and committee votes on the bill.

    It should be a scandal that a vested lobby group has such enormous monopoly over its output on such a contentious issue. However, it should also be no surprise from the establishment stooge that is the BBC.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • The sweep of impending Medicare and Medicaid cuts in the US under Donald Trump could be about to put a severely chronically ill patient’s life at risk.

    Living with multiple complex and under-recognised conditions including hypermobile Ehlers-Danlos syndrome (hEDS), myalgic encephalomyelitis (ME), tethered cord syndrome, postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS), 34 year-old US resident Emily Johnson has been in palliative care since the age of 28.

    Trump: the thin end of the US healthcare wedge

    Now, the Republicans’ plans under Trump to slash these programmes could mean losing access to the vital care currently keeping her conditions stable.

    What’s more, not only will the cuts sever her financial bridge to her daily treatment, but it could stop her getting the surgeries she sorely needs. These are crucial treatments that could improve her long-standing health issues. These would help her regain a quality of life that enables her to not just survive, but live with fewer life-threatening, debilitating symptoms, and she hopes, even pursue her passions.

    However, none of this was a given from the get-go. This is because, notwithstanding the cuts, these US’s healthcare insurance schemes were already leaving Emily falling through the gaps.

    Of course, Emily won’t be the only US citizen facing a situation like this. Crucially though, her story encapsulates the devastating impact Medicare and Medicaid cuts could unleash on patients, particularly from low income households. There’ll be countless US residents living with a multitude of chronic health conditions, without access to the necessary financial aid for treatment if these cuts go ahead.

    A catastrophic combination of chronic illnesses

    Emily lives with a number of chronic health conditions that severely impact her daily life. These include, but are not limited to:

    • Hypermobile Ehlers-Danlos syndrome (hEDS).
    • Postural orthostatic tachycardia syndrome (POTS).
    • Tethered cord syndrome.
    • Myalgic encephalomyelitis (ME/CFS).
    • Mast cell activation syndrome (MCAS).
    • Craniocervical instability (CCI).
    • Dystonia.
    • Scoliosis.
    • Intracranial hypertension.
    • Lumbar herniation (slipped disk in the lower back which causes nerve compression).

    EDS is a group of connective tissue disorders in which collagen doesn’t work. It’s characterised by joint hypermobility, skin hyperelasticity, and tissue fragility.

    Her accompanying POTS is a type of dysautonomia – a dysfunction of the autonomic nervous system. It causes an abnormal increase in heart rate, as well as low blood pressure and volume when a person transitions from laying down, to standing.

    Similarly, tethered cord syndrome is a disorder of the nervous system as well. Essentially, it’s caused by tissue attaching itself to the spinal cord, and restricting its movement. A neurosurgical condition, it’s common in EDS patients. While some may be born with tethered cord syndrome, it’s also possible to develop it. It can get progressively worse over time. Emily has had surgery to fix this – so it isn’t currently a problem. However, it’s possible it could re-tether at any point.

    Meanwhile, ME is a chronic systemic neuroimmune disease which affects nearly every system in the body. It causes debilitating symptoms. These typically include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions. Post-exertional-malaise (PEM) is the hallmark feature of ME. This involves a disproportionate worsening of other symptoms after even minimal physical, social, mental, or emotional exertion.

    Both CCI and MCAS are also common conditions for people living with EDS. The former involves increased mobility at certain junctions in the neck, while the latter is a disorder that manifests in excessive release of chemical mast cells, such as histamine.

    Her dystonia is a neurological movement disorder that can trigger uncontrolled and painful spasms.

    What’s more, a CCI and EDS expert in New York – neurosurgeon Dr Paolo Bolognese – has also identified that Emily has a number of serious spinal problems, and as a result:

    Emily had developed dozens of neuromuscular, seizure, neurological and other diagnoses limiting her ability to work, continue a higher education, drive, exercise, run, walk or sit upright for very long, and even daily activities like eating meals, showering and household chores. Emily has had to rest at home in bed for most of the day, every day for 8 years. She has been in Palliative Care since age 28.

    A perfect Trump storm in a privatised health system

    For many patients, this catastrophic combination of chronic health conditions often co-occur in conjunction with each-other. There are multiple factors, including genetic mutations in EDS and POTS for instance, that link the conditions together. Another is the vagus nerve, which plays a major role in the parasympathetic nervous system. You can read more about some of these connections here.

    Like for others living with a cluster of these, they have compounded Emily’s health and put her in life-threatening circumstances on a number of occasions.

    When she was 22, an Epstein Barr infection worsened her POTS. As part of this, she suffers severe hypovolemia – low blood volume – which impacts her body’s ability to pump blood around the circulatory system as it should. Essentially, it’s a state of abnormally low fluid volume in her body, including with her blood plasma. Meanwhile, her CCI and intracranial hypertension (pressure build-up around the brain), alongside a suite of spinal injuries and conditions from years of all going untreated, has caused her cerebral spinal fluid leaks (CSF). Together, the pair have meant she has needed home IV infusions to replenish her fluid loss.

    Repeated infections have also worsened her MCAS to near fatal consequences. And, as a result, this has exacerbated her EDS connective tissue damage and a number of spinal issues as well. As her GoFundMe describes:

    She was admitted into Palliative Care at age 29, and with appropriate MCAS care she was able to return from near-fatal status by late 2020. However, MCAS going undiagnosed and untreated so long played a pivotal role in corroding tissue and further damaging Emily’s spine and organs.

    If all that weren’t enough, her spinal problems, coupled with MCAS, as well as both Covid-19 infections and vaccines, have caused her to develop serious clotting conditions. Alarmingly, Emily has already had a pulmonary embolism due to these issues.

    Her ME and long Covid have likely additionally contributed to her severe microclotting problems too – which required urgent treatment. Without this, her microclotting would have left her at risk of a second pulmonary embolism, or other life-threatening health emergencies like heart attack, or stroke.

    It’s not just ‘having to lay down’, it’s living with literal brain damage

    Emily expressed to the Canary how important it is that people understand how “devastating” these conditions are to live with:

    Like, it’s not just having to lay down because I sort of don’t feel well.It literally feels like, the benign proximal peripheral vertigo, like I’m falling off the top of a building every time I have these flares. And that feeling persists for like several days, sometimes a couple of weeks for several hours a day.

    Of course, Emily is referring to the tendency for the media, public-facing organisations, and politicians to vastly underplay the impact of many enormously debilitating conditions. What’s more, so often, they misrepresent how dangerous the intersecting of these conditions can be. That is, the impact of the plethora of debilitating symptoms is inordinately more than the majority of people realise.

    Emily gave just one example of the type of life-threatening experience and daily lived reality she contends with that might come as a shock to most. An MRI showed that flares of Emily’s intracranial hypertension has literally been causing her brain damage.

    Emily explained the symptoms and processes causing this:

    When the cerebellar tonsils in the back of my skull are being sucked down into my brainstem, it’s pushing down on the cerebral spinal fluid flow to my brain. So it’s not just the leaks, it’s like the whole pathway for the flow to get to my brain is being suppressed. So a lot of my worst symptoms occur during these flares. The way the flares kind of work is it’s a roller coaster. The pressure surges begin, it starts causing pituitary damage in the front of my brain.

    This pituitary brain damage causes a whole suite of metabolism and hormone issues. More specifically, the pituitary gland regulates many of the body’s functions as it oversees the endocrine system. The severity of her condition has meant Emily has needed specialist tests. This has included one where clinicians at Mount Sinai Hospital in New York “put a bolt” into her brain:

    They drill a hole in my head and they put a probe that goes and touches my brain.

    And then they have me lay down, sit up, stand up, sit back down, lay down over a couple of minutes each. And then they measure how the pressure in my head responds. And I’ve also tilted my head from side to side when laying down and when sitting up.

    Emily approaches her terrifying experience with humour – a coping mechanism so many chronically ill people have to turn to amid a toxic medical environment that dismisses, gaslights, and trivialises their under-recognised conditions. While she is now getting some help from clinicians in the field, it’s almost inconceivably unconscionable she has been left without the investigations and treatment she has desperately needed for decades. Yet, Emily’s experience is characteristic of so many living with chronic illnesses. The paucity of care has consigned her to live in immense pain and with a genuinely life-threatening suite of symptoms on a regular basis:

    I’ve had to have my brain probed twice and I’m may have to have my brain probed a third time. And to the point where I’ve told my friends that for my birthday, I want a t-shirt made that says like, I got my brain probed three times and I didn’t even get to see any aliens. I’m trying to keep humor about it, you know, but it’s really hard.

    Overall then, it has been a perfect storm of health problems feeding into one another. It’s why, under the US’s privatised healthcare system, Medicare and Medicaid have both been essential to Emily.

    Medicare and Medicaid make treatment possible… but for how much longer

    To this point, Emily has only been able to access the care and surgeries she has needed due to Medicare and Medicaid.

    These are the US’s two joint federal and state health insurance programmes. Not everyone is eligible for them – but as a disabled person who also claims Social Security Disability Insurance (SSDI) benefits, Emily qualifies for some of their coverage. Like the name suggests, SSDI is the US’s main social security support for disabled people. As her GoFundMe notes however, the SSDI alone covers only her most basic daily needs, if that:

    The majority of Emily’s SSDI goes to home health and prescription copays, out-of-pocket supplements and care, and medical equipment and garments recommended by doctors. The rest of her SSDI covers her phone, home infusion care, and expensive allergy-free groceries. She lives with family for care assistance, transit, and free housing so she can afford the care she has received so far.

    In other words, her SSDI hasn’t enabled her to seek out the treatments she needs to stop her conditions getting increasingly worse. That’s where both Medicare and Medicaid have come in – but only to a point.

    Currently, her Medicaid helps her to afford the IV fluids she requires daily to keep her conditions as stable as possible.

    What’s more, her Medicare insurance has made it so she could access important surgeries. Right now, she’s recovering from her second intracranial hypertension pressure surgery test, and a right styloidectomy. The latter was a surgical procedure to shorten the styloid bone in her neck. She’s hoping to follow this up with a left styloidectomy in the summer. After that, she might then be able to pursue surgery for her CCI and intracranial hypertension as well.

    Trump cuts incoming…

    Now though, things could be about to get inordinately worse. This is because the Trump administration has pressed forwards with plans to unleash a wave of trillions in public spending cuts. Naturally, in the firing line, will invariably be Medicare and Medicaid.

    On the campaign trail, Trump had promised not to touch these. However, unsurprisingly, Republicans are making a move to slash them anyway. Crucially, commentators and opposition politicians have already pointed out that to meet this $2tn budget-saving agenda, it’s highly likely some of this will come from these.

    For instance, in February, the US Congress House Budget Committee set out that the Energy and Commerce Committee would need to make $880bn in savings over the next decade. This is the body which oversees Medicaid, among other programmes. And Republican representatives have already confirmed that Medicaid will be a target for reform – meaning cuts of course.

    So, Emily is concerned that any forthcoming cuts to these programmes could mean losing access to her care and surgeries altogether. She told the Canary that:

    I also don’t know how much it would cost to try to access IV fluids if I lose home infusion via losing Medicaid — whether I try to get fluids at infusion centers or whether I’d have to go to urgent care or ERs to get them, as many commercial infusion clinics don’t take insurance and I can’t afford to pay hundreds of dollars per IV bag.

    To make matters worse, it could also impact her care prospects in New York and Iowa, where she hopes to get her surgeries.

    Further implications

    Specifically, her Medicare won’t cover her living in a medical facility to get daily IV fluids. Therefore, if she loses the Medicaid, and consequently, her home infusion, she’ll have to rely on doctors sending her to infusion centres. However, Emily detailed the barriers she anticipates with this already.

    For one, Emily isn’t sure that infusion centres wouldn’t just turn her away. Notably, she explained that:

    Due to venous insufficiency and vein fragility from EDS and sodium overload issues from POTS, I can’t run a bag of IV fluids any faster than 3 hours, and that’s only if I haven’t had to skip any days of IV fluids so my veins are hydrated enough to rush a bag.

    Generally, she needs IV fluids for four hours at a time, daily. But centres often aren’t equipped for daily patients – or willing to take them at that:

    As you can imagine, even if my doctors order IV fluids to urgent care or emergency rooms, these facilities don’t like being burdened with infusion patients needing to stick around for hours, and they’ve turned me away without IV fluids despite severe symptoms in the past

    On top of this, she worries centres won’t be trained or able to give her the IV fluids correctly anyway. Notably, due to years of peripheral catheters causing EDS connective tissue damage, and MCAS reactions making this worse, she can only have an intravenous catheter direct to her central vein. So the loss of her home infusion could put her more at risk as well.

    And, even supposing she does manage to get the surgeries she needs, she told the Canary that:

    If Medicaid is cut, I can’t get a waiver for a home health aid to help with surgical recovery which would be necessary, so not having this would mean I may not be able to get the cervical fusion and/or decompression even if I’m approved for one or both surgeries.

    Not uncommon conditions, just shamefully ignored and stigmatised

    And Medicare cuts are one thing, but Emily now faces these unaffordable costs for another reason too. That is, the persistent failure of the medical system that put her in this disgraceful health scenario in the first place. Notably, Emily has lived with some of these conditions her whole life, and others, for many years before she could get a diagnosis. All told, it has been an uphill battle for recognition, let alone getting the medical help she has needed.

    So, she hoped to drive home that while there are no curative treatments for many of her conditions, with the right surgeries and therapeutic treatments, at the right time, she might not be so dangerously sick now:

    It’s not at all uncommon for EDS patients to have several conditions from these sectors restricting blood flow and causing regular issues that can be dangerous and even fatal. The goal is try to get as much care as possible in the best order possible that improves quality and functionality of life before patients are in a dangerous or fatal situation.

    Emily expressed to the Canary that medical inattention and inaction has irrevocably damaged her body. But, she wanted her story to raise awareness for others. She hopes it will help them find correct diagnoses, and get treatment before things become more severe as they have for her.

    Clinicians should know – but don’t

    Moreover, she pointed out how her conditions are hardly uncommon:

    even though my type of EDS, hEDS, is common at 1 in 500, and even though the Covid pandemic doubled the POTS population, and even though MCAS was extremely common before Covid at 1 in 6 people, and even though Covid has massively increased the MECFS population (and with all of these, the populations of patients with severe microclots and craniocervical instability and intracranial hypertension and tethered cord syndrome and lumbar herniations and scoliosis all present in the above diagnostic populations have increased and worsened in severity) — despite all of this, most clinicians still mistakenly believe these aren’t common issues or that these aren’t severe issues, and as the patient populations and needs have grown considerably, the number of clinicians trying to learn from existing clinicians who are experts in these conditions hasn’t kept pace.

    And Emily is right. Given the high rates of all these, you’d be forgiven for thinking that clinicians would know how to diagnose and treat them. In reality, this couldn’t be further from the case.

    Notably, as the Canary has consistently reported, ignorance and stigma persists across the medical establishment.

    It’s the very epitome of the metaphorical mascot animal – the zebra – encapsulating the experience of EDS and other patients with ‘rare’ illnesses. That is, medical professionals “hear the sound of hooves, think horses, not zebras” when they look at a person’s symptoms. In short, these conditions, that aren’t rare in reality, get missed, when they really shouldn’t.

    In big part, it’s because doctors have long peddled the biopsychosocial brand of junk psychologising science. This dismisses the biophysiological pathologies of these under-recognised chronic health conditions. With it has come decades of patient gaslighting, neglect, trivialisation, and medical abuse.

    ‘Clinician associated trauma’ and life-threatening complications

    Predictably then, it’s the same old story in Emily’s case too. Her crowdfunder page details this, stating:

    Some doctors have refused care for Emily just because she has EDS, and this diagnostic discrimination interrupted and prevented critical care over the years. Other doctors suggested Emily was faking having these symptoms and conditions, despite specialist diagnoses and even confirming diagnoses from two or three or four other specialists. Also, despite fantastic mental health providers affirming these were biophysical issues and that Emily wasn’t faking seizures, collapses, blackouts, vomiting and other issues. Some doctors forced her to take psych medications that worsened these conditions significantly due to prescription interactions and condition interactions.

    She was even forced into a psych ward when she was unable to walk and experiencing severe symptoms, where she was abused severely and denied medical care.

    Emily told the Canary that ultimately, it was clinician malpractice that had repeatedly put her life at risk:

    Unfortunately I have been in a handful of life-threatening situations before and since being admitted to palliative care when I was 28 years old. All of them were a result of not having access to medical care I knew I needed, and my knowledge of these conditions not being taken seriously by local clinicians who didn’t have the knowledge to help me but also didn’t want to listen to me about how to learn how to help me or transfer my care to someone who was knowledgeable who could help.

    And her story could be a carbon copy of many others living with these and other chronic illnesses. The Canary has reported on numerous patients in the UK, and elsewhere, with strikingly similar experiences.

    Crowdfunding to survive in 2025: nothing new, because nothing changes

    It’s important to note that while Medicare has covered some of Emily’s treatments, it never has met all the expenses for her surgeries.

    Medicare has accounted for 80% of Emily’s health insurance covered costs. The rest would ordinarily be paid for by Medicaid. However, there’s a catch. Medicaid would ONLY cover the remaining 20% for care in the same state that Emily lives in. Unfortunately, as many people living with chronic illnesses like hers will know, specialists are few and far between.

    Unsurprisingly then, Emily has had to travel out of state to get tests and surgeries from experts in her conditions. Consequently, the international community has been stepping up. Together, they have been filling in for the gaping holes in the US’s social safety net. She has managed to fundraise some of these costs on a GoFundMe.

    However, she hasn’t yet met her goal for all the upcoming surgeries she desperately requires. So her crowdfunder still needs all the help it can get.

    It was another severe ME patient that the Canary has previously reported on who brought Emily’s story to our attention. Nevra, based in Pakistan, has been a long-time friend of Emily’s. She relayed to the Canary how Emily had been an unwavering source of support for her over the years, as she has for many other chronically ill patients.

    Nevra shared a video with the Canary that she shared to her followers to amplify Emily’s story. In this, she articulated:

    I think Emily is one of the bravest people that I know, if not the most brave. I think that we absolutely cannot lose somebody like her. It’s not just because she is an amazing person and does so much for the community behind the scenes, uncredited – it’s also that, she deserves to live.

    Nevra therefore urged people to support Emily if they can. You can contribute to her GoFundMe page here.

    Trump: putting chronically ill people’s lives at risk

    The fact that these life-saving treatments could become even more out of reach for Emily is a scandal. Yet, states everywhere devalue disabled people so systematically, that the resources and treatments to even keep chronically ill people alive, is all too often, too much to ask.

    Nobody should have to crowdfund to survive. However, this is still the shameful reality for too many chronically ill patients like Emily the world over – not just under Trump in the US.

    Featured image supplied

    By Hannah Sharland

    This post was originally published on Canary.

  • I’ll be honest: I have voted Labour all my life. I grew up in a Northumbrian mining town and come from a family who worked in the pits. I’m old enough to remember the Thatcher years. I’m still in shock from the announcements about Department for Work and Pensions (DWP) benefits cuts to disabled welfare in the Spring Statement.

    I never thought that having a Labour government in power would equal a devastating attack on disabled people like me. People like me who have worked hard all their life, only to find themselves disabled with an incurable disease. It’s a disease that our NHS doesn’t even have a single bed in the entire country set aside for or any medical treatments available. That’s myalgic encephalomyelitis (ME).

    DWP benefits cuts: a deep-set discriminatory attitude to disabled people

    I believe that this deprivation of financial support for disabled people is in no way related to ‘supporting people into work’. MP Darren Jones has compared us to children having their pocket money taken away. What an absolutely degrading comparison. He may have apologised, but the damage is done. Millions watched those comments, and will have been influenced into believing disabled people are lazy children.

    It is telling that Jones thought that this was an acceptable comment to make on national television. It suggests that this attitude is accepted in Westminster. This is not about balancing the books. This goes deeper. This government’s actions display a deep-set, nasty, discriminatory attitude towards disabled people: an attitude that the world has seen before.

    The government’s own assessments show that 250,000 disabled people, 50,000 of them children, will be pushed into poverty by these DWP benefits cuts. The Labour Party appears happy with these statistics and is continuing with its devastating plan. Why?

    Why, knowing you are about to push 50,000 children into starvation, would you be unconcerned? I think the answers lie in your beliefs.

    The Labour government doesn’t see disabled people as human beings

    These are children of disabled people. Yes, disabled women have children too. We are, after all human beings. Although, you would be forgiven for thinking we aren’t, the way this government is attempting to convince the rest of society we aren’t worthy of basic human rights. Those 50,000 children come from families with a disabled parent. The overwhelming message being sent by our Labour government is that we are less.

    The belief that disabled people are somehow ‘less’ than abled people is, sadly, extremely common. I have experienced this frequently as a disabled mother of a disabled child. It is almost an accepted norm in our society. As disgusting as that is, that is the reality.

    The shocking thing is that, Labour appealed to disabled people to vote for them. Keir Starmer made a consistent point of saying that his government would listen to disabled people.

    On national television, Starmer stood there saying we needed to let him regain the public’s trust in politicians. Disabled people voted for the Labour party based on these promises. Yet, now, when disabled people are saying ‘you are going to starve us and these DWP benefits cuts will kill us, please do not go forward’, we’re being ignored.

    Perhaps if you truly can’t afford £5bn in DWP benefits support, scrap the new Thames crossing and save £8bn? The lives of disabled people clearly mean nothing to our government. A bridge, that may reduce their own commute time is more important to them, than my child having a meal on the table.

    We’ve been here before… in Nazi Germany

    Can you sink any lower?

    An election campaign that tricked disabled people into voting for a party that is, knowingly, with the facts right in front of them, pushing quarter of a million of us towards starvation. DWP benefits cuts kill.

    There are reams of evidence showing how disabled people have died in the most appalling conditions following inhumane treatment from the DWP. That evidence is about to increase in size. The horror of what is coming is unimaginable.

    On a final note, and I’m not going to apologise in advance if you are offended by this stark comparison. Go and Google Aktion T4.

    Starting in 1939 the German government killed between 275,000 and 300,000 disabled people because they were considered a financial burden to society. These killings were two years before the start of WWII. Why did they start with us, with disabled people? Because they knew it was an easy sell to the public.

    This attitude that disabled people are less is an attitude perpetuated by fascist governments throughout history.

    As the mother of a child with Down’s Syndrome, it is a physical pain I feel when I see photos from historical archives showing people with my daughter’s condition, who were deemed a financial burden to society, because they couldn’t work, and therefore either starved to death or murdered by another means.

    I wouldn’t have made it either.

    The chilling reality is though, that this perception of disabled people who can’t work as a ‘burden’ seems to be shared by our current UK government in 2025.

    Disabled lives matter: stand with us against DWP benefits cuts

    In this current climate, with our government pushing the narrative that disabled people don’t deserve DWP benefits if we can’t work, please question what information you are being fed by those in power. Please question what beliefs are driving our government to punish disabled people, for having the audacity to be alive, and require food and shelter.

    Above all, please stand up for us, for those who cannot advocate for themselves. Learning disabled people, those with dementia, or any condition that creates a barrier to being able to speak out. We need you stand with us and say: “No. This is not right. Disabled lives matter”.

    Featured image via the Canary

    By Rachel Curtis

    This post was originally published on Canary.

  • The Department for Work and Pensions (DWP) disability benefit cuts affect all disabled people – there’s no doubt about that. They will plunge thousands into poverty, isolate individuals, and without the ability to fund their disability aids, care, or therapies, impact their independence, and this is true for those across the community. However, for disabled women and marginalised genders and their families, it’s critical to understand the ways that the cuts are even more of a threat.

    To comprehend the context of the cuts as a gender issue, it must first be understood that disability itself is a feminist issue across the board. Women are more likely to be disabled, and often left undiagnosed or without the support they need for longer. It is also women who commonly bear the brunt of state underfunding.

    DWP disability benefit cuts: women are providing more care

    Just as women are more likely to perform household tasks and take on the burden of social reproduction – the unpaid and unseen work to keep society functioning – they are more likely to be providing care. Whilst social reproduction refers to a wider profile of tasks, without proper social care funding, the responsibility of care for disabled individuals often falls on the shoulders of families. Notably, this heavily primarily impacts women, who make up 59% of unpaid carers.

    For families providing care themselves, Personal Independence Payment (PIP) can be what keeps them afloat, to make up the difference in funds where they are caring rather than working. This is particularly true because Carer’s Allowance is still criminally low, and still places limits on how many hours can be worked to top up funds, as well as often being tied to eligibility of other benefits.

    In 2024, the Centre for Care found that the economic contribution of unpaid carers in the UK was £184 billion a year – whilst the combined NHS budget in 2021/22 was £189 billion. This makes unpaid care provision equivalent to a second NHS: to cut support to the bone to these families is shameful.

    For many, the disability benefit cuts will push them even further away from employment due to having to provide further unpaid care, or stop their ability to undertake part-time work. It means the impact on employment rates may have the opposite effect to what Reeves intends. When the reasoning for the cuts supposedly surrounds boosting employment, this is absurd: the cuts are not only to benefits, but to gender equality.

    The additional threats to disabled women

    For disabled women and marginalised genders, the disability benefit cuts also pose additional threats. Disabled women and marginalised genders are more than twice more likely to experience domestic abuse, and the cuts mean that these individuals are much less likely to be able to leave such a situation without access to funds.

    In particular, disabled women and marginalised genders are more likely to experience economic abuse, and are four times more likely than their non-disabled peers to have a partner or ex-partner stop them, or try to stop them, accessing benefit payments that they or their children are entitled to receive.

    Similarly, disabled women are over three times more likely to have a partner or ex-partner refuse to give child support or maintenance (or pay it unreliably) when they can afford to pay it normally. For many, PIP or similar benefits are a lifeline that keep themselves and their children out of poverty.

    290,000 of children in poverty are living in families on PIP, and children living in a family with a disabled person are more likely to be in poverty than those without. This shows the further devastating impact for families, and particularly the women within them, who are bearing the burden of care and labour much more heavily.

    It is fundamentally reprehensible for the chancellor to allow these cuts to have such impacts across vulnerable populations, and leave those who are multiply marginalised behind, in search of ‘savings’. While the government’s argument that they have inherited a difficult financial position is true, the reality is that this is not the only way they can fix that. Hitting disabled people, and particularly women and marginalised people the hardest, is something utterly unnecessary.

    The disability benefit cuts must be seen intersectionally

    It’s key for the cuts to be understood from an intersectional lens, and to be aware of the double burden these changes will have on women and those of marginalised genders.

    Similarly, it must be acknowledged that those who are also marginalised by their race will be more heavily impacted, and are often more likely to experience some of the issues discussed in this article. This includes living with certain conditions such as autoimmune diseases, and being less likely to receive needed painkillers and support.

    Disabled Black and brown women will also be hit harder by the disability benefit cuts. They experience the additional burden of racism that is often seen in the medical and benefit system, as well as lower standards of living than both their non-disabled or white peers.

    When discussing the cuts and advocating against them, we must understand this as not isolated to disability: this is an issue that feminists and those working in gender equality must also be a part of pushing back on.

    Featured image via the Canary

    By Charli Clement

    This post was originally published on Canary.