Category: Disability

  • Charities the Spinal Injuries Association and Aspire are calling on the government to think again after it quietly dropped a commitment to increase the amount of money that chronically ill and disabled people in England can claim to adapt their homes via a little-known grant – the Disabled Facilities Grant – that crucially doesn’t affect people’s benefits.

    Disabled Facilities Grant: a stealth real-terms cut on top of benefits

    The Disabled Facilities Grant is used to fund alterations aimed at easing living at home, such as installing wet-rooms or stairlifts. The maximum amount a person is entitled to claim has been capped at £30,000 since 2008.

    An external review commissioned by the government in 2018 recommended that the upper limit of the Disabled Facilities Grant should rise in line with inflation, with further allowances made for more expensive areas. A commitment to increase this figure has been shelved despite this £30,000 sum now being worth around a third less due to inflation and increased building costs.

    According to charities, the consequences of living in accommodation that is not suitably adapted to your needs can be devastating. Crucially, the grant does not affect people’s benefits entitlements.

    Kenny’s story

    Kenny Hughes, who has been supported by Spinal Injuries Association, sustained a spinal cord injury 18 months ago and is paralysed from the waist down. The father from Rochdale is currently living in a ground floor flat which is totally unsuitable for his needs. It means everyday tasks like washing himself can be difficult and dangerous.

    Kenny said:

    Maybe once every three weeks I will have a shower. Then I just use wipes in bed, clean myself off using wipes. I don’t have carers and I can’t afford to pay for carers, so I just have one every now and again.

    It is too dangerous, I can fall and my feet get tangled up behind the sink, in between the feet of the chair, and it takes the scabs that I’ve got on my ankles, which are pressure sores, and it rips them off. They are dressed by a district nurse twice a week but they’re not getting better because of where I am living.

    The benefits of these grants

    Charities say these grants are meant to help prevent these situations, to give people the chance to live independently and get on with their lives – even if they claim benefits.

    Laura Hagan, Housing Manager at Aspire explains how making do in a property that hasn’t been adapted to meet your needs is degrading:

    Aspire’s research shows that such situations rob people of their independence, significantly reducing their chances of getting work, and affecting both their physical and mental health. The long-term impact is immense, on the individual and on their family.

    All too often the funding available is too small to make the changes that are needed, leaving people in limbo; many of the people Aspire works with are unable to access their bathroom, their kitchen, or even to actually leave the house. That the already insufficient grants are being eroded over time, making them even less fit for purpose, is a disgrace.

    The government says…

    A spokesperson for the Department for Health and Social Care said:

    Our programme of social care transformation is working to ensure that people can access the right care, in the right place, at the right time and we are focused on the priorities in our ambitious 10-year reform programme.

    The Disabled Facilities Grant helps around 50,000 people each year to adapt their homes to help them live more independently.

    Last March we announced an additional £100m over two years for the Disabled Facilities Grant, on top of the more than £500m already available annually for grants – so that more people can benefit.

    However, Dharshana Sridhar, campaigns manager at Spinal Injuries Association, believes this is having a knock-on effect, making the crisis in social housing worse as people are forced to sell their homes if they cannot afford to adapt them:

    The amount being capped at £30,000 since 2008, despite rising costs and inflation, has already forced many disabled people to sell their homes and go on the social housing register, where there is already a lack of accessible homes for disabled people.

    It is imperative the government addresses this urgently and updates the means testing, or we will see many more forced to sell their homes. Many people with disabilities are currently on long waiting lists for suitable housing and feel trapped with nowhere suitable to live.

    “It’s like we don’t matter anymore”

    Kenny summed the situation up:

    It’s like we don’t matter anymore, I’m just shocked. With inflation everything should be going up and now the cost of building work is huge compared to even three years ago. Everyone’s wages are going up but I am stuck in this property now as if I don’t matter.

    It’s really important to stay in your own home if you can, the upheaval you have to go through following a spinal cord injury and then on top of that coming back to a strange place that isn’t your home is devastating when you feel you have lost so much already.

    Featured image via Rawpixel – Envato Elements

    By The Canary

    This post was originally published on Canary.

  • Charities the Spinal Injuries Association and Aspire are calling on the government to think again after it quietly dropped a commitment to increase the amount of money that chronically ill and disabled people in England can claim to adapt their homes via a little-known grant – the Disabled Facilities Grant – that crucially doesn’t affect people’s benefits.

    Disabled Facilities Grant: a stealth real-terms cut on top of benefits

    The Disabled Facilities Grant is used to fund alterations aimed at easing living at home, such as installing wet-rooms or stairlifts. The maximum amount a person is entitled to claim has been capped at £30,000 since 2008.

    An external review commissioned by the government in 2018 recommended that the upper limit of the Disabled Facilities Grant should rise in line with inflation, with further allowances made for more expensive areas. A commitment to increase this figure has been shelved despite this £30,000 sum now being worth around a third less due to inflation and increased building costs.

    According to charities, the consequences of living in accommodation that is not suitably adapted to your needs can be devastating. Crucially, the grant does not affect people’s benefits entitlements.

    Kenny’s story

    Kenny Hughes, who has been supported by Spinal Injuries Association, sustained a spinal cord injury 18 months ago and is paralysed from the waist down. The father from Rochdale is currently living in a ground floor flat which is totally unsuitable for his needs. It means everyday tasks like washing himself can be difficult and dangerous.

    Kenny said:

    Maybe once every three weeks I will have a shower. Then I just use wipes in bed, clean myself off using wipes. I don’t have carers and I can’t afford to pay for carers, so I just have one every now and again.

    It is too dangerous, I can fall and my feet get tangled up behind the sink, in between the feet of the chair, and it takes the scabs that I’ve got on my ankles, which are pressure sores, and it rips them off. They are dressed by a district nurse twice a week but they’re not getting better because of where I am living.

    The benefits of these grants

    Charities say these grants are meant to help prevent these situations, to give people the chance to live independently and get on with their lives – even if they claim benefits.

    Laura Hagan, Housing Manager at Aspire explains how making do in a property that hasn’t been adapted to meet your needs is degrading:

    Aspire’s research shows that such situations rob people of their independence, significantly reducing their chances of getting work, and affecting both their physical and mental health. The long-term impact is immense, on the individual and on their family.

    All too often the funding available is too small to make the changes that are needed, leaving people in limbo; many of the people Aspire works with are unable to access their bathroom, their kitchen, or even to actually leave the house. That the already insufficient grants are being eroded over time, making them even less fit for purpose, is a disgrace.

    The government says…

    A spokesperson for the Department for Health and Social Care said:

    Our programme of social care transformation is working to ensure that people can access the right care, in the right place, at the right time and we are focused on the priorities in our ambitious 10-year reform programme.

    The Disabled Facilities Grant helps around 50,000 people each year to adapt their homes to help them live more independently.

    Last March we announced an additional £100m over two years for the Disabled Facilities Grant, on top of the more than £500m already available annually for grants – so that more people can benefit.

    However, Dharshana Sridhar, campaigns manager at Spinal Injuries Association, believes this is having a knock-on effect, making the crisis in social housing worse as people are forced to sell their homes if they cannot afford to adapt them:

    The amount being capped at £30,000 since 2008, despite rising costs and inflation, has already forced many disabled people to sell their homes and go on the social housing register, where there is already a lack of accessible homes for disabled people.

    It is imperative the government addresses this urgently and updates the means testing, or we will see many more forced to sell their homes. Many people with disabilities are currently on long waiting lists for suitable housing and feel trapped with nowhere suitable to live.

    “It’s like we don’t matter anymore”

    Kenny summed the situation up:

    It’s like we don’t matter anymore, I’m just shocked. With inflation everything should be going up and now the cost of building work is huge compared to even three years ago. Everyone’s wages are going up but I am stuck in this property now as if I don’t matter.

    It’s really important to stay in your own home if you can, the upheaval you have to go through following a spinal cord injury and then on top of that coming back to a strange place that isn’t your home is devastating when you feel you have lost so much already.

    Featured image via Rawpixel – Envato Elements

    By The Canary

    This post was originally published on Canary.

  • ‘Why haven’t I got the cost of living payment yet’ is a question on millions of people’s minds at present. The Department for Work and Pensions (DWP) has been rolling the payments out since 6 February. However, not everyone is entitled to them. Moreover, the department has not said just why it pays some people immediately, while making others wait. So, here’s the Canary‘s breakdown of the situation.

    DWP payments: a brief history

    As the Canary has documented, the DWP’s cost of living payments have been controversial. There have been two rounds of them. The most recent one saw the department give people £900, split into three payments. It paid the first one in April 2023, the second payment of £300 in October/November, and the third payment of £299 will be made from 6 February.

    People have argued that firstly the money doesn’t even cover the real-terms cuts the government has made to benefits. Secondly, the payments haven’t reflected the rising price of everything (inflation).

    However, the DWP has continued with the payments, anyway – with the one that is arriving from 6 February being the last.

    Why haven’t I got the cost of living payment yet?

    Let’s cut to the chase.

    The DWP says it has started paying people the cost of living payment from 6 February. However, it has given a date of 22 February as the final day on which people may receive them. If you are entitled to it, it will be paid – but the DWP has never made clear just how it works out the order in which it pays people.

    If you still haven’t received the payment, then you can report it as missing here.

    However, there has been controversy over just who is entitled to the cost of living payment. The DWP has repeatedly claimed that “most people on DWP benefits” will get the payments. However, this is not accurate.

    Not entitled? You’re one of at least 1.6 million.

    Many Universal Credit claimants will get the money. However, if you only claim one of the following benefits, you will not get the cost of living payment:

    But how many people is this in total? In April 2023, the Canary worked out this was at least 1.6 million people. So, if you’re on any of these benefits and wondering ‘why haven’t I got the cost of living payment yet?’ then this might be your answer.

    So, what did the government do for some of the 1.6 million people it didn’t support? Well, it gave them a cost of living payments worth £150. This was if they were claiming certain benefits like Personal Independence Payment (PIP). The DWP made these payments in 2022 and 2023. However, since then it has not given chronically ill and disabled people any more support – particularly those not entitled to the main cost of living payment.

    Not enough in reality

    This has been devastating for many. Chronically ill and disabled people face far higher costs than non-disabled people – on average a staggering £1,122 per household, per month. Plus, inflation (how much the price of things we buy rises by) has outstripped benefit increase – meaning they’ve actually been real-terms cuts.

    As the Canary previously reported, between April 2021 and September 2023:

    • Prices in general have risen 36% more than benefits have.
    • Food prices in particular have risen 107% more than benefits have.
    • Energy prices have risen 471% more than benefits have.

    So, in reality the main payments were a drop in the ocean for many chronically ill and disabled people – let alone the £150. However, they were at least something – hence a petition is calling on the government to reinstate them.

    Reinstate the disability cost of living payment

    Tom Howard is a disability rights campaigner. In December 2023, he started a petition calling on the government to reinstate the £150 cost of living payment. The petition states:

    The rising cost of living, especially the rise in energy bills, disproportionately affects disabled people. For example, someone with a chronic lung condition may require a set temperature in their home. This may mean that they have their heating on more than a comparable household. Furthermore, some may require specialist and/or medical equipment to be plugged in and active throughout the day. This, in turn, can lead to higher energy usage and therefore higher energy bills. This point is even more pertinent as energy bills are set to increase further at the start of January 2024.

    The petition calls on the government to:

    to acknowledge the plight of disabled people and reinstate the Disability Cost of Living Payment. The payment should also be reviewed and increased to effectively support disabled people in the UK. It is a matter of basic human rights and social justice.

    You can sign the petition here.

    So, if you’re wondering ‘why haven’t I got the cost of living payment yet’, then either hold tight – or sign the petition.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • There are 88,000 chronically ill and disabled people ‘missing’ from the tech workforce, according to the professional body for IT.

    Disabled people in tech: why is the industry not recruiting them?

    Disabled people comprise 16% of the UK workforce but only account for 11% of the technology specialists, according to analysis by the Chartered Institute for IT (BCS), in its Diversity Report 2023: Disability. That means for representation in IT to be equal to workplace norms there should be an additional 88,000 disabled IT specialists employed in the UK.

    BCS recently published an additional report called The Experience of Neurodiverse and Disabled People in IT. It reviewed the latest government data and also sought feedback from over 50 IT experts, all of whom had additional needs, about their views on the tech sector.

    The gap persists despite an increase in the number of people working in the tech sector reporting disabilities – rising from 196,000 people in 2021 to 208,000 in 2022.

    Neurodiversity representation also an issue

    Matthew Bellringer, Chair of the BCS Neurodiversity Specialist Group, said:

    It’s clear that the IT profession itself can and should be an excellent place for disabled and neurodivergent people to work, and digital tools can be a great enabler.

    We have a severe skills gap in tech, which is a massive societal cost. Helping disabled people to utilise their expertise by providing the support they need is essential to boosting the talent pipeline in tech and other sectors.

    Some progress has been made. However, it’s disappointing — though not terribly surprising — that many barriers still exist.

    Cyber security expert Lisa Ventura MBE, who campaigns for diversity in the tech sector, said:

    More needs to be done to promote the positive side of employing people with disabilities and those who are neurodivergent – such as championing their resilience, and ability to look at issues and solve problems from a different perspective.

    It’s also essential to ensure accessible products and initiatives are evaluated as fit for purpose and not just imposed regardless – one size does not fill all of us.

    Introducing more inclusive practices can benefit all workers. Everyone’s physical, sensory and cognitive abilities vary, and improving matters for people with more significant requirements can help all who share that need to any extent.o

    Some neurodivergent people contributing to The Experience of Neurodiverse and Disabled People in IT report appealed for better understanding. One described their anxiety in the workplace:

    I feel like an alien trying to hide my neurodiversity.

    Another said:

    Not making eye contact seems to be seen as submissiveness, not just simply that I don’t want to.

    So much more needed for disabled people in tech

    Some hearing impaired and Deaf people spoke about the practical issues they encountered, such as enduring vastly different audio levels in online meetings. One respondent said:

    I miss much of what some people say. Being unable to keep up with the rate of speech and sometimes complete inaudibility in meeting rooms due to noisy air-conditioning means I can’t turn up my hearing aid volume.

    Recommendations from the BCS report include:

    • Greater education and awareness of disability in the workplace.
    • Ensuring clear communication in meetings that encompasses all needs.
    • Appropriate workplace adjustments.
    • An inclusive recruitment process.
    • Suitable assistive technology that works for the individual.
    • A supportive work environment where disabled employees have a voice, are listened to and have their views respected.
    • Better training for managers and coworkers to understand and rectify the barriers to work faced by disabled people.
    • Fostering a culture that discourages discriminatory behaviours.
    • Pro-active initiatives – for instance, consciously deploying neurodiverse individuals in teams.

    Featured image via seventyfourimages – Envato Elements 

    By The Canary

    This post was originally published on Canary.

  • The scandal around Fitbit Charge 5 effectively flatlining on users is growing – as the device’s parent company denies it’s anything to do with a rogue software update. However, missing in the story is the fact that many chronically ill people rely on Fitbits to monitor particular conditions. For these people, the death of their devices is having a damaging impact.

    Fitbit Charge 5: is it or is it not the software update?

    As BBC News reported, Fitbit has been having a few issues. Since late December, countless users have seen their devices die after installing the brand’s latest firmware update. As BBC News reported:

    Users on Fitbit’s own forums however are adamant the software change is to blame, with some Charge 5 users urging against installing the update, and describing how their devices no longer work properly, if at all.

    “Basically, it’s useless now, the battery’s dead,” Dean, in Essex… told the BBC, as he explained his problems with his Charge 5.

    He said previously his device was “working really well” and was “easily” able to last seven days per charge – and said the thought the software update was to blame.

    “I don’t really see why hundreds of other people would be having the same problem after installing the update if it wasn’t”.

    However, for many people Fitbit is more than just a lifestyle device. It is an essential part of healthcare if you happen to be chronically ill.

    A (previously) useful device for chronically ill people

    On Twitter (now X), people have been sharing their uses of Fitbit for their chronic illnesses:

    Nicola Jeffery, founder of campaign group the Chronic Collaboration, is one such user. She uses her Fitbit Charge 5 to monitor her postural orthostatic tachycardia syndrome (POTS). In Nicola, POTS is caused by brainstem compression of the vagus nerve due to craniocervical and atlantoaxial instabilities.

    POTS is where a person’s heartrate does not properly regulate on a change of position – that is, from laying down to sitting, or sitting to standing. It elevates but doesn’t come back down again. As one person on Twitter pointed out:

    So, Nicola is tachycardic (having a heartrate of over 100bpm) a lot of the time – by simply standing up. In her, POTS also causes cyclic vomiting syndrome where she vomits uncontrollably – roughly every 30 minutes – for around 24 hours at a time.

    Therefore, being able to monitor her heartrate is crucial.

    Fitbit Charge 5: losing all its spoons

    However, Nicola’s Fitbit also failed in late December – and hasn’t been working ever since. She and the Chronic Collaboration said:

    Many of us who live with invisible and chronic illnesses were very keen to try out Fitbit devices. They have allowed patients to constantly monitor heart rates, sleep patterns, and levels of exertion, which for people with chronic conditions like POTS, myalgic encephalomyelitis (ME), and other invisible illnesses, has been revolutionary.

    However, the failure of Fitbit Charge 5s has left many of its users not only frustrated but also feeling completely let down and out of pocket. We especially feel let down here at the Chronic Collaboration. While we expect to lose our spoons, we do not expect the device we use to suddenly lose all its spoons too.

    So far, Google has denied the failure of the Fitbit Charge 5 is to do with the firmware update. A spokesperson told the BBC:

    We’re still investigating this issue, but can confirm it is not due to the recent firmware update. Users should continue to update their devices to the latest firmware and contact Fitbit Customer service at help.fitbit.com if they encounter any issues.

    A preposterous response if ever there was one – as you cannot update a dead Fitbit Charge 5. Nicola said that:

    This is completely unacceptable and not good enough, Google. You device has gone from Fitbit to Fib-bit.

    While the puns are welcome, it is a serious issue.

    Google: fix up, please

    At its heart is the fact that Fitbit does not consider itself a medical device. As CNET wrote:

    Fitbit… and similar wearables… aren’t intended for medical diagnosis, a distinction that gadget makers are very clear about. Yet smartwatches and fitness bands can now track metrics, such as blood oxygen saturation and body fat estimates, that may have previously required a visit to the doctor or a specialized device.

    Heartrate is one such metric that is crucial for some chronically ill people. So, regardless of what type of device Fitbit Charge 5 considers itself to be, it should as a minimum acknowledge that there is a whole community of people reliant on it every day.

    Within this is the bigger question of why chronically ill people living in the UK with conditions like POTS have to spend their own money to monitor their conditions – when the country allegedly has a publicly-funded health service that is supposed to provide this sort of care for free. Answers on a postcode marked ‘government reorganisation and privatisation’.

    Fortunately for Nicola, she is on a pharmacist’s counters-worth of medication for her POTS, and it is now relatively under control. For others, they’re not so lucky – and a Fitbit could mean the difference between being unwell and being severely unwell.

    Ultimately, though – Google’s half-baked fob-off is not good enough. Chronically ill people like Nicola are reliant on their Fitbits. It needs to recognise this, and take the failure of people’s devices as seriously as they take wearing them.

    Featured image via Reddit

    By Steve Topple

    This post was originally published on Canary.

  • The BBC has been issuing stock responses to chronically ill people over a now-notorious episode of Dragon’s Den that featured the Acu Seeds product. A lot of people living with the disease the programme discussed, myalgic encephalomyelitis (ME) are too unwell to keep having to jump through the BBC‘s complaint hoops just to have their voices heard.

    So, here’s a summary of how to follow up your SECOND complaint to the BBC – along with a response you can copy and paste, which should fit most people’s complaints.

    As the Canary previously reported, there has been a scandal over Giselle Boxer’s Acu Seeds product and the BBC giving it a platform. In short, Boxer claimed these ear seeds helped cure her ME. The dragons lapped this up. However, this angered the chronic illness community – because it is highly unlikely that Acu Seeds did anything for Boxer’s illness.

    What is ME?

    ME is a chronic disease that affects almost every system in people’s bodies – like the immune, nervous, digestive, and hormonal systems. Many of its symptoms majorly impact a patient’s day-to-day life – like cognitive impairment, profound and disabling fatigue, influenza-like symptoms, heart, lung, temperature, and blood pressure dysfunction, hypersensitivities, and digestive dysfunction.

    However, the main symptom which sets ME aside from other illnesses is called post-exertional malaise (PEM), the NHS Scotland website says. Oddly, NHS England’s website makes no mention of this. PEM is a worsening of many, if not all, the body’s systems, as well as symptoms, after physical, mental, or emotional exertion.

    Research has shown people with ME have a worse quality of life than many cancer patients, people living with type I diabetes, and stroke survivors.

    In its worst form, people with severe or very severe ME often cannot eat or drink, are permanently bedbound or hospitalised, cannot sit or stand up, and are completely reliant on others for their care. However, crucially ME can kill people – and has.

    In 2021, Maeve Boothby O’Neill died from very severe ME at the age of 27 after the NHS allegedly neglected her. Doctors denied her a feeding tube, and later denied total parenteral nutrition, which could have saved her life. An inquest into Maeve’s case is ongoing. Her father, journalist Sean O’Neill, wrote about his daughter’s story for the Times.

    The BBC: issuing stock responses to complaints over Acu Seeds

    So, Acu Seeds’ Dragon’s Den appearance rightly caused outrage and upset in the chronic illness community. Nearly 500 people used campaign group the Chronic Collaboration and the Canary‘s interactive complaint form to formally take the issue up with Ofcom. However, on social media people were unhappy with the BBC‘s response when they complained to it initially.

    The response from the broadcaster was to issue people with a statement identical to the one on its website.

    Now, people are unhappy with the BBC‘s response when they complained to it for a second time, to follow up on their initial complaint.

    This is what the BBC sent one complainant:

    Essentially, this is the BBC saying ‘well, clearly you were upset; we put a note on the programme, so SURELY you must be happy now?’ Of course, this is not good enough at all – as Boxer’s product is still on the Dragon’s Den episode, and the note the BBC added to the show in no way goes far enough to address the myriad issues with it.

    So, if you have complained to the BBC for a second time, and it’s sent you an unacceptable response, here’s how to follow it up.

    The BBC complaints framework consists of three stages:

    1. You directly complain to the BBC via its website here.
    2. If you are not happy with its response, you must complain again via the BBC website stating why you want it to reconsider your original complaint (you cannot complain about new things).
    3. If you are not happy with the next response they give, you then complain to the Executive Complaints Unit (ECU). When the BBC responds to part two, it should tell you how to complain to the ECU.

    You can read the full BBC Complaints Framework here.

    Here’s how to complain to the BBC

    So, here’s how to do part three of the above process – complaining to the ECU – assuming you’ve already done parts one and two.

    1. Follow the link you were sent by the BBC in its follow up email to your complaint.
    2. Enter your email and it will ask you to verify this.
    3. Where it says “Please enter your complaint”, firstly put in what you previously complained about – but summarise it if possible, sticking to key points like “the Dragon’s Den episode was not impartial”, “the episode provided inaccurate information”, and so on. Then, copy and paste the following (this hopefully should cover most people’s complaints):

    Specifically, I believe the programme breached the following parts of the BBC’s Editorial Guidelines.

    One) section 3 “Accuracy”, subsection 3, paragraph 9 (“Reporting Statistics and Risk”). 

    Episode 3 (series 21) of Dragon’s Den, specifically the Acu Seeds’ segment, would fall under these guidelines. The founder’s claims on the programme could encourage people living with ME/CFS to believe that Acu Seeds could treat or cure their illness – which may lead to psychological distress and potential health side effects (due to Acu Seeds not having been medically tested). Moreover, ME/CFS has no known cause, treatment, or cure – therefore Dragon’s Den promoting Acu Seeds as a treatment for it could cause individuals to alter their behaviour etc etc.

    Therefore, we believe this episode of Dragon’s Den breached the BBC’s Editorial Guidelines, as the episode was inaccurate. 

    Two) section 3 “Accuracy“, subsection 3, paragraph 16 (“Avoiding Misleading Audiences”).

    Episode 3 (series 21) of Dragon’s Den, specifically the Acu Seeds’ segment, would fall under these guidelines. Specifically, the founder’s claims and the BBC’s additional information it added on screen to the episode still serve to mislead audience members. The founder’s claims on the programme could encourage people living with ME/CFS to believe that Acu Seeds could treat or cure their illness – which may lead to psychological distress and potential health side effects (due to Acu Seeds not having been medically tested). Then, the BBC’s additional information it added on screen specifically states “Acu Seeds are not intended as a cure for any medical condition”. However, this still leaves viewers under the impression Acu Seeds could be a treatment for a medical condition – specifically, due to the founder’s claims around it and ME/CFS – thus misleading the audience. 

    Therefore, we believe this episode of Dragon’s Den breached the BBC’s Editorial Guidelines, as the episode was inaccurate. 

    Three) section 4 “Impartiality”, subsection 3, paragraph 26 (“Drama, Entertainment and Culture”). 

    Episode 3 (series 21) of Dragon’s Den, specifically the Acu Seeds’ segment, would fall under science as a controversial subject – therefore, section 4, subsection 3, paragraph 26 would therefore apply in this instance, as the episode was not impartial. 

    ME/CFS is a controversial subject in science – as there is no agreed cause, treatment, or cure. The founder’s claims on the programme could lead the audience to believe there was a treatment and/or cure for ME/CFS when one currently does not exist. Dragon’s Den therefore should have applied section 4, subsection3, paragraph 26 of the editorial guidelines.

    Therefore, we believe this episode of Dragon’s Den again breached the BBC’s Editorial Guidelines.

    Try to keep all this under 1,000 words, as per the BBC guidelines.

    The Canary hopes this will be enough to cover most people’s complaints.

    In the next section, the BBC complaints website asks you for the case number (of the complaint, this should be in the BBC‘s response to you).

    You can then review your answers and send it off.

    Acu Seeds: let’s see what happens next

    The BBC Complaints Framework states it should respond to your second complaint within 20 working days.

    Once it responds again, you can escalate it to the ECU.

    Spoiler alert: it’s likely the BBC will dismiss people’s follow-up complaints, and send out stock responses to everyone again. Don’t think it’s anything you’ve done. This is just what our supposed public service broadcaster does.

    If you want more support with doing this, please email editors(at)thecanary.co

    Featured image via BBC iPlayer

    By The Canary

    This post was originally published on Canary.

  • As the date for the final cost of living payment approaches, the government is still ignoring millions of chronically ill and disabled people over the issue. This is because, while the Department for Work and Pensions (DWP) will be giving millions of people the £300 – hundreds of thousands of others won’t get anything. Moreover, the cost of living payment isn’t sufficient for many chronically ill and disabled people.

    So, a petition is calling for the DWP to reinstate another cost of living payment that it previously gave out, worth £150.

    Cost of living payments

    As the Canary has documented, the DWP’s cost of living payments have been controversial. There have been two rounds of them. The most recent one saw the department give people £900, split into three payments. It paid the first one in April 2023, the second payment of £300 in October/November, and the third payment of £299 will be made from 6 February.

    People have argued that firstly the money doesn’t even cover the real-terms cuts the government has made to benefits. Secondly, the payments haven’t reflected the rising price of everything (inflation). However, thirdly – over 1.6 million people reliant on benefits have missed out on these cost of living payments.

    So, what did the government do for some of the 1.6 million people it didn’t support? Well, it gave them a cost of living payments worth £150. This was if they were claiming certain benefits like Personal Independence Payment (PIP). The DWP made these payments in 2022 and 2023. However, since then it has not given chronically ill and disabled people any more support – particularly those not entitled to the main cost of living payment.

    Not enough in reality

    This has been devastating for many. Chronically ill and disabled people face far higher costs than non-disabled people – on average a staggering £1,122 per household, per month. Plus, inflation (how much the price of things we buy rises by) has outstripped benefit increase – meaning they’ve actually been real-terms cuts.

    As the Canary previously reported, between April 2021 and September 2023:

    • Prices in general have risen 36% more than benefits have.
    • Food prices in particular have risen 107% more than benefits have.
    • Energy prices have risen 471% more than benefits have.

    So, in reality the main payments were a drop in the ocean for many chronically ill and disabled people – let alone the £150. However, they were at least something – hence a petition is calling on the government to reinstate them.

    Reinstate the disability cost of living payment

    Tom Howard is a disability rights campaigner. In December 2023, he started a petition calling on the government to reinstate the £150 cost of living payment. The petition states:

    The rising cost of living, especially the rise in energy bills, disproportionately affects disabled people. For example, someone with a chronic lung condition may require a set temperature in their home. This may mean that they have their heating on more than a comparable household. Furthermore, some may require specialist and/or medical equipment to be plugged in and active throughout the day. This, in turn, can lead to higher energy usage and therefore higher energy bills. This point is even more pertinent as energy bills are set to increase further at the start of January 2024.

    The petition calls on the government to:

    to acknowledge the plight of disabled people and reinstate the Disability Cost of Living Payment. The payment should also be reviewed and increased to effectively support disabled people in the UK. It is a matter of basic human rights and social justice.

    You can sign the petition here.

    ‘Sidelined and forgotten’

    Tom told the Canary:

    Time and time again, disabled people are sidelined and forgotten by those representing us in government. It shouldn’t surprise anyone that less than 2% of MPs identify as disabled, but amongst the general public this figure has been recorded as high as 24%.

    Politics is inaccessible, and this is also true on a local level. Numerous support programmes used to exist to help disabled people get into politics. Such programmes have, of course, fallen victim to a decade of cuts and austerity under the Tories.

    This leads me onto my petition, as petitions are needed so our voices can be heard.

    In this petition, I am calling for the immediate review and reinstatement of the Disability Cost of Living Payment. This payment was made to around six million eligible individuals in Autumn 2022 and early Summer 2023.

    Then, news of this financial support disappeared.

    The government needs to act

    Tom continued:

    Campaign groups, lobbyists and MPs have since questioned the government and it appears, at present, there is no current plan to continue this financial support for disabled people in the UK. But, the fact remains, disabled people have been disproportionately affected by the Cost of Living Crisis.

    I’ve been contacted by individuals that require round the clock heating due to their lung condition, or constant use of electricity for their medical equipment. It’s not possible for these individuals to simply cut their energy usage as doing so could have a severe impact on their health and wellbeing.

    The Disability Cost of Living Payment, albeit not nearly enough, provided some respite for those in need and helped mitigate the disproportionate costs being faced by the most vulnerable in our society. I urge the government to consider their current stance and to immediately reinstate this support for disabled people across the UK.

    Tom is right – chronically ill and disabled people are always an afterthought by governments and institutions, due to systemic ableism. While the £150 cost of living payment may not be much in comparison to the main payment, it did indeed provide some respite.

    For the government to allow inflation to have got out of control, while providing no support for chronically ill and disabled people, is nothing short of a scandal. It must address the issue now.

    Please sign and share the petition today. You can do that here.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  •  

    This is a lightly edited transcript of “The Best of CounterSpin 2023,” originally aired on December 29, 2023.

          CounterSpin231229.mp3

     

     

    Janine Jackson: Every week, CounterSpin tries to bring you a look behind the headlines of the mainstream news—not because headlines are false, necessarily, but because the full story is rarely reflected there. The voices, the communities, the ideas that are not front and center in the discourse of the powerful, but could help us move toward a more equitable, peaceful, healthy communal life.

    Many—most—conversations we need to have, have to happen around corporate news media, while deconstructing and re-imagining the discourse that they’re pumping out day after day.

    CounterSpin is thankful to all of the activists, researchers, reporters and advocates who appear on the show. They all help us see the world and one another more clearly, give us tools to make a better future, and offer other resources once we understand that we can’t believe everything we read.

    You’re listening to the Best of CounterSpin for 2023, brought to you by the media watch group FAIR.

    ***

    Just about a year ago, lots of people were traveling, or trying to, on holiday and vacation trips. Thousands of them found themselves stranded in airports, their flights canceled, their luggage who knows where, and airlines utterly unresponsive to their complaints. Beyond chaotic, it was confusing in a country where the rhetoric is all about the customer being king, and getting what you pay for. In January 2023, CounterSpin spoke with Paul Hudson, president of FlyersRights, a nonprofit that organizes the consumer rights of airline passengers.

    Paul Hudson

    Paul Hudson: “The airlines, unfortunately, are only incidentally in the transportation business. They’re primarily, especially their executives, in the business of making money.”

    Paul Hudson: The intention of the PPP programs and some other bailouts of the airlines, which altogether involved about $90 billion, was that you would keep the staff on the payroll so they would be ready when pandemic ended to restore traffic, and they wouldn’t have to go from a cold start.

    But the airlines, unfortunately, are only incidentally in the transportation business. They’re primarily, especially their executives, in the business of making money. If that meant reducing their payroll through other means, that got around the intention of the law—and there was no real oversight by the federal government on money—that’s what they did.

    And they continued to pay, in some cases, dividends. They paid large bonuses to CEOs and top executives. Some of them also did stock buybacks to keep their stock price up, while their profits, of course, were dwindling to nothing.

    The reforms that we’ve been promoting pretty much have been ignored by DoT, which is the only regulator of the airline industry. And, as a result, things have gotten worse and worse.

    For example, you would think there would be some requirement to have a certain level of backup or reserve capacity, for personnel as well as equipment. But there is none. There is no requirement, and some airlines actually have negative reserves. So even on their best day, they cancel 1 or 2 percent of their fights. It’s profitable to do that.

    Another example is that there is no requirement that they maintain any level of customer service. Each airline sets their own goals about that, but there’s no enforcement. And they just say, “Well, I’m sorry.” They don’t answer your phones. They don’t have the personnel to do it.

    And the area that’s most crucial, which is pilots: We have a shortage of pilots. Pretty much everyone agrees with that; except perhaps the pilot union, that wants to leverage the situation, says there is no shortage. But the airlines are simply not recruiting the pilots they need, and haven’t done so for years, especially for regional airlines. They don’t pay them nearly enough.

    And the proposals that FlyersRights made, going back to June of this year, about 17 of them, have pretty much been ignored by DoT, at least until recently.

    ***

    JJ: In a year that called for and saw a great deal of organized protest, one focal point was Cop City, a militarized police training complex being built on Atlanta’s South River Forest, over and against community opposition. An environmental activist known as Tortuguita was killed in a hail of police bullets, while, as an independently ordered autopsy revealed, they sat cross-legged with their hands up.

    Kamau Franklin is founder of the national grassroots organization Community Movement Builders, and co-host of the podcast Renegade Culture. We talked about Cop City with him in March, starting with the history of the land itself.

    Kamau Franklin

    Kamau Franklin: “This is a city that doubled down on police violence and police militarization after these uprisings.”

    Kamau Franklin: That land, in terms of it being a forest before the invention of Cop City, was promised to the adjacent community, which is 70% Black, as a recreational and park area, particularly as the land reforested itself over time. Park areas where there were supposed to be nature trails, hiking available, parks available.

    And when the idea of Cop City arose, from the Atlanta Police Department, the City of Atlanta and the Atlanta Police Foundation, all of those plans were scrapped immediately, without any input from that adjoining community. And instead they decided to move forward with this idea of Cop City.

    This is a perfect illustration of how the state, vis-a-vis the city, the state government and even, in some ways, the federal government, operate in tandem. And a lot of times, most of the time, it doesn’t matter what party they are, but operate in tandem at the whim of capital, and at the whim of a, relatively speaking, right-wing ideological outlook.

    And, again, it doesn’t matter which party it is we’re talking about. It doesn’t matter whether or not those folks are Black or white, but an ideological outlook that says overpolicing in Black and brown communities is the answer to every problem.

    And so here in particular, you talked about the process. This process of developing Cop City came after the 2020 uprisings against police violence, the 2020 uprisings that were national in scope, that started after Breonna Taylor, George Floyd and, here in Atlanta, Rayshard Brooks were killed by the police, and it caused a massive uprising and movement across the nation again.

    The response by the authorities here in Atlanta was to push through their plans on building Cop City, to double down on their efforts, again, to continue the overpolicing of Black communities, particularly here in Atlanta.

    Atlanta is a city that is gentrifying at an astronomical rate. It’s gone from a 60% Black city to one that’s less than 50% in only a matter of 20, 30 years, all of that under Black leadership.

    It’s a city that, in terms of those who are arrested, 90% of those who are arrested in Atlanta by the police are Black people; its jails are filled with Black people.

    And so this is a city that doubled down on police violence and police militarization after these uprisings.

    ***

    JJ: If baristas on strike were surprising, Hollywood writers on strike were downright shocking for those who vaguely imagine that these are dream jobs for which the only appropriate response is  “thank you.” We got a window on a world of people who are, at the end of the day, workers, from Eric Thurm, campaigns coordinator for the National Writers Union, and a steering committee member of the Freelance Solidarity Project. He wrote an informative piece on the historic writers and actors strike for GQ. One topic we touched on was AI—not the science-y, techno aspect of it, but the power part.

    Eric Thurm

    Eric Thurm: “Every time technology evolves, the studios will use it as a way to attempt to cut workers out.”

    Eric Thurm: Technology has been a source of struggle for decades, in particularly the Writers Guild contracts. Because, essentially, every time technology evolves, the studios will use it as a way to attempt to cut workers out, which I suspect a lot of people will be intimately familiar with. This is the business model of some of the biggest companies and most worker-hostile companies in the world.

    And that dates back to when home video emerged, or when DVD box sets emerged. And part of the reason that streaming pays so little is that it was new the last time that the writers went on strike in 2007, and they agreed to have it be covered by the minimum basic agreement, but not as fully as, like, a TV network.

    And so, of course, the companies exploited that as much as possible. And on some level, it’s hard to blame them, at least in the sense that the purpose of the company is to take as much value out of the workers as it can.

    And this is what people are referring to when they say that the studios are really trying, as much as possible, to turn writing, but also acting, and all of the other myriad jobs that go into making entertainment that people watch, into gig work, into stuff where you just have no say in your work, and are told by this unfeeling algorithm, or app or whatever it is, what you are and are not supposed to do.

    And in the context of what people like to call AI, beyond the fact that the issue with a lot of these programs is that they are trained on a lot of other people’s work—I saw someone recently describe it as, “This is just a plagiarism machine,” which I think is a very accurate description. Even in cases where it does something interesting, you can use it as a smoke screen to avoid having to credit the people that created something.

    I think that’s something that we are going to see the studios try more and more, even without necessarily having AI be involved.

    ***

    JJ: Corporate journalists still invoke, and many people still believe in, a vision of an intrepid, independent press corps that is speaking truth to power. The sad extent to which that is not true was spotlighted painfully in June, when CNBC‘s Andrew Ross Sorkin hosted a chummy interview with Chevron CEO Mike Wirth. CounterSpin heard from Emily Sanders, editorial lead at the Center for Climate Integrity and founder of ExxonKnews, who saw it as emblematic of a larger—and, let’s acknowledge, historically environmentally devastating—media failure.

    Emily Sanders of the Center for Climate Integrity

    Emily Sanders: “The fossil fuel industry has a long history of investing in the media in order to manipulate the conversation about our reliance on oil and gas.”

    Emily Sanders: Mainstream media have had a very hard time connecting climate change to oil companies, and their decades of pollution and deception about the harms caused by fossil fuels.

    And when you see coverage of deadly heat waves and wildfire smoke, for instance, there’s often no mention of things like how the major oil companies are still spending millions every year lobbying to delay the transition to renewable energy, or how Chevron, the world’s most-polluting investor-owned oil company, is currently pouring even more money into increased fossil fuel extraction and production, after making record profits last year.

    So it’s also not a coincidence that mainstream media is so far behind on this. The fossil fuel industry has a long history of investing in the media in order to manipulate the conversation about our reliance on oil and gas, what needs to be done about it and what the obstacles really are to addressing climate change.

    And that goes back to at least the ’80s and ’90s, when oil companies began placing ads and advertorials, or ads disguised as news editorials, in major outlets like the New York Times and the Washington Post, that downplayed the reality of climate change.

    And even today, as we learned from last year’s congressional investigations and hearings into the industry’s disinformation, companies like Exxon, Chevron, BP and Shell are still running advertisements that look like articles in the country’s biggest news outlets, promoting things like algae and so-called natural gas as climate solutions. So they’ve really used the veil of journalistic credibility to help disguise their misleading and deceptive advertising for quite a while.

    And we’re seeing that, not just with advertising, but with some reporters themselves still failing to name the source of climate inaction, and still unable or unwilling to recognize and call out disinformation, sometimes even parroting fossil fuel industry framing about how we can’t move off oil too quickly, or how Big Oil is working on ways to solve climate change, despite that they’re causing it, without actually challenging those misconceptions.

    ***

    JJ: August 2023 saw the 33rd anniversary of the Americans with Disabilities Act. And Joe Biden, while acknowledging that disabled people still face discrimination, led with the sort of rhetoric that politicians and news media generally use, claiming that it’s

    hard for younger generations to imagine a world without the ADA, but before it existed, if you were disabled, stores could turn you away and employers could refuse to hire you. Transit was largely inaccessible.

    That rang weirdly out of touch to many, including our guest, Kehsi Iman Wilson, co-founder and chief operating officer of New Disabled South.

    Kehsi Iman Wilson

    Kehsi Iman Wilson: “In no social movement is a victory, whether minor or major, an indicator that there need be no additional social movement.”

    Kehsi Iman Wilson: In no social movement is a victory, whether minor or major, an indicator that there need be no additional social movement—or political movement, for that matter.

    And when we’re talking about disability—disability rights, disability access, certainly disability justice—so much of the real, lived experience of disabled people contradicts a lot of President Biden’s opening statements.

    For example, when you talk about “couldn’t imagine a world where there was inaccessible public transit”—there’s still inaccessible public transit for the majority of disabled people. And unless you’re in the privileged few who can afford paratransit services, where they’re accessible where you live, things even as basic as access to sidewalks is still a major issue.

    We’re dealing with so many infrastructure issues in this country, and, as we know, any issue doubly or triply impacts disabled people.

    We’ve seen, and we continue to see, a spate of laws being passed across counties, across states, making it more difficult to access the ballot box—for example, getting rid of drop boxes, ballot boxes. But when you do that, you are not only disenfranchising, effectively, large portions of people of color, of people who live in rural areas, but disabled people. And that’s not talked about.

    ***

    JJ: Media like the Washington Post got the positive vapors this year about the scourge of “organized retail crime.” The Post called for an aggressive federal crackdown on people stealing from grocery stores, etc., even after the National Retail Federation acknowledged that the data they had put out about the impact of such theft was bogus.

    If elite media cared about theft, of course, they’d be tracking a different story: companies stealing straight out of the paychecks of employees struggling to make ends meet. We talked about wage theft this fall with Rodrigo Camarena, director of Justicia Lab and Co-creator of ¡Reclamo!, a tech-enabled initiative to combat the problem.

    Rodrigo Camarena:

    Rodrigo Camarena: “In some sectors and industries, it’s more likely for you to be a victim of wage theft than to be paid your full wage.”

    Rodrigo Camarena: Wage theft is so common and so ubiquitous that we don’t really consider it in our day-to-day lives. But, like you mentioned, it’s this huge problem. It’s actually the largest form of theft, when you compare it to burglaries, armed robberies, motor vehicle thefts combined.

    And it happens whenever a worker is deprived of the wages that they’re owed lawfully. So that could mean not being paid a minimum wage, not being paid overtime, having deductions from someone’s paycheck made, or just not paying someone; they show up at the job one day and the person that hired them isn’t there anymore. Failing to honor sick leave or other benefits is another form of wage theft.

    In some sectors and industries, it’s more likely for you to be a victim of wage theft than to be paid your full wage. And it’s a problem that disproportionately impacts low-wage workers, women and immigrants, and in particular undocumented immigrants, who often don’t feel like they can stand up for themselves, or request what they’re owed lawfully, because of their status.

    So I think there’s a lot of misinformation about your rights as a worker that might prevent people from standing up for themselves and defending these rights, but this is part of the challenge in addressing this problem.

    ***

    JJ: You might not guess it from coverage, but Covid-19 did not magically disappear in 2023. People continued to get sick and to die in the US and around the world. And drug companies like Pfizer continued to make hay from that sickness and death. Peter Maybarduk brought us an update in October. He’s director of Public Citizen’s Access to Medicines Group.

    Peter Maybarduk

    Peter Maybarduk: “Drug corporations have really been in the driver’s seat, working privately, secretly, on their own logic’s terms, of where they can make the most money.”

    Peter Maybarduk: Pfizer has more than doubled the price of its Covid-19 treatment Paxlovid—nirmatrelvir plus ritonavir—to the US government from around $530 a course up to $1,390 for a list price now. And that despite the fact that Pfizer’s already made $18 billion off this drug in global sales. And they’re raising the price right at a time when it hurts most, because will, obviously, to fight and to fund pandemic response has diminished greatly, and the US government is transitioning its response to the commercial market.

    So there’s very limited public resources now, in the United States and around the world, to ensure continuity of treatment. And in order to make up for the loss of volume, Pfizer has decided to increase prices, but that’s going to suppress demand further; that’s going to make it harder worldwide to access Covid treatment for people that need it.

    In many ways, Covid-19 is a pandemic where prescription drug corporations have determined who receives what treatment or vaccine when, at least at a population level, at a sort of country-by-country level. And health agencies have been on the receiving end of that; they haven’t always known what price another country’s paying, they haven’t known what’s their place in line, the terms and conditions.

    And, of course, global health authorities haven’t been able to effectively prioritize and indicate that we must prioritize population A, B and C, in these ratios, in order to end the pandemic as quickly as possible. Instead, drug corporations have really been in the driver’s seat, working privately, secretly, on their own logic’s terms, of where they can make the most money, or what public relations and pandemic concessions they want to make. And, unfortunately, that’s continuing here in this case.

    ***

    JJ: Many people’s worst fears when they learned of Hamas’ October 7 attack in Israel have been borne out and beyond in subsequent weeks. The moment called for context— historical, social and human. But that has been largely missing, at least in most major US media. We talked about how an absence of understanding of the present impairs our ability to move forward with Phyllis Bennis, director of the New Internationalism project at the Institute for Policy Studies

    Phyllis Bennis

    Phyllis Bennis: “If we’re serious about preventing acts of violence in the future…we have to be prepared to do the hard work of looking at context.”

    Phyllis Bennis: Resistance, including resistance violence, never just happens out of thin air. It happens in response to something. It happens in the context of something.

    And if we’re serious about preventing acts of violence in the future, understanding the acts of violence that have already occurred, we have to be prepared to do the hard work of looking at context, looking at root causes, something that at moments of crisis— which, for Israelis, this is clearly a moment of unexpected crisis, but for people in this country as well—it’s crucial that we take those hard steps to figure out what gives rise to this. Because otherwise we’re simply mouthing platitudes of condemnation.

    Condemnation of violent attacks on civilians is completely appropriate. Some of the acts of some of the Hamas militants were in complete violation of international law, and should be condemned.

    And it’s also true that they didn’t just happen. They happened in the context of 75 years of oppression of Palestinians, decades of an apartheid system. The lives of the people in Gaza, the 2.2 million people who live in that enclosed, open-air prison, if you will, one of the most crowded places on the face of the Earth, have lived under a state of siege that was imposed by Israel in 2007.

    So all of those things have to be taken into account to understand—not to justify, not to ever justify—the killings of civilians, the killings of children and old people; unacceptable, should be condemned; and we have to understand from where that comes, why these things happen. Otherwise, we have no basis to figure out a strategy to stop the violence on all sides.

    ***

    JJ: And as Israel’s siege of Gaza goes on, to the increasing horror and outrage in this country and around the world, some powerful figures in politics and the press have turned their sights on those who would protest the bloodshed. The New York Times columnist Bret Stephens told readers that opposition to Israel’s violence was evidence that US progressives are, at bottom, antisemitic. Because if Jewish people oppose racist policing, for example, Black people should “trade back” uncritical support for the State of Israel.

    It’s a cynical view of coalitional social movements, but there’s no reason to believe it’s going to be the vision that wins the day. CounterSpin heard a very different story from Sonya Meyerson-Knox, communications director at Jewish Voice for Peace.

    Sonya Meyerson-Knox of Jewish Voice for Peace

    Sonya Meyerson-Knox: “As long as there’s been the concept of a State of Israel, there have been Jews that have been leading opposition to it.” (image: Zero Hour)

    Sonya Meyerson-Knox: The belief that none of us are free unless all of us are free, it’s not just a slogan. It’s absolutely, I think, the only way that any of us are going to have the future that we’re trying to build.

    Look at all the polls, including the ones that are coming out right now. A majority of US voters, and the vast majority of Democratic voters, are all demanding a lasting ceasefire, and most of them want to see US military aid to the Israeli government conditioned, if not stopped entirely.

    And yet none of that actually appears on the pages of the New York Times. It treats the Palestine movement, and those of us who stand for Palestinian freedom and liberation, as though we are somehow an anomaly, when in fact we are the vastly growing majority.

    As long as there’s been the concept of a State of Israel, there have been Jews that have been leading opposition to it. The American Jewish population, let alone the global Jewish population, is not a monolith, and it never was and it never will be.

    And that’s one of the things I think that makes the Jewish community so strong, is our long cultural and historical understanding of ourselves as a place that values debate and introspection and proving your sources, and then doubting them and challenging them and researching them, and coming back to the discussion and teasing things out, over and over again, along with, and this is especially important to the younger generation, I would argue, that are coming up now as young adults, the idea of social justice, of tikkun olam, repairing the world.

    When I was growing up, as a kid, I thought being Jewish meant that my grandparents were union supporters and Communist activists, and I thought that’s what being Jewish was. And not everyone has that particular background, but so many of us have absolutely been raised to the idea that part of what it means to be a Jew and to practice Judaism, not just once a week or twice a week, but every day, constantly, is this commitment to trying to make the world a better place. And increasingly, like we’re seeing right now, that has to include Palestine, that has to include what’s happening to Palestinians.

    ***

    JJ: That was Sonya Meyerson-Knox. Before her you heard Phyllis Bennis, Peter Maybarduk, Rodrigo Camarena, Kehsi Iman Wilson, Emily Sanders, Kamau Franklin and Paul Hudson.

    And that’s it for The best of CounterSpin for 2023 is only a sample of the valuable conversations it’s been our pleasure to host this year.CounterSpin is produced by the media watch group FAIR, and you can find decades of CounterSpin shows and transcripts at FAIR.org. The show is engineered by Reilly Bair and the one and only Alex Noyes. I’m Janine Jackson. Thank you for listening to CounterSpin.

     

    The post ‘We Have to Do the Hard Work of Looking at Context’<br></em><span style='color:#000000; font-size: 23px; font-weight: normal; line-height: 1em; font-family: 'Open Sans','sans-serif'; padding-bottom: -10px;'>Transcript of The Best of CounterSpin 2023 appeared first on FAIR.

    This post was originally published on FAIR.

  • In December campaigners from Not Recovered UK – who all either live with long Covid, myalgic encephalomyelitis (ME, sometimes known as chronic fatigue syndrome, CFS), or are impacted by them – launched a major new campaign about these disabling chronic illnesses. However, the response to the campaign from the UK’s main medical research organisation has been slammed by the group as ‘disheartening and upsetting’.

    Long Covid and ME: destroying lives

    Across the country, Not Recovered UK is taking out billboard adverts. The group has put them in Bournemouth, Southampton, Havant, Swindon, Portsmouth, Manchester, Leeds, Bradford, and Glasgow:

    A long Covid and ME billboard in Southampton

    A Long Covid and ME billboard in Southampton

    The billboards are highlighting that for millions of people, there are currently no effective treatments for long Covid and ME. They also state that doctors often leave these patients without help. Overall, the billboards point to the fact there is still no cure for either of these conditions, too. All of this is partly due to the medical community’s poor understanding of long Covid and ME:

    The image of a long covid and ME billboard. It reads "Long covid and ME/CFS destroy lives. No help. no treatments. No cure. We demand clinical trials now. www.notrecovereduk.org"

    The public have been funding the campaign via a crowdfunder. Many people living with long Covid or ME have donated themselves. You can donate to the crowdfunder here.

    Aaron Campbell founded the campaign. He has lived with long Covid since July 2022. Campbell said he launched the billboards project out of:

    Desperation. ME patients have been left to suffer for decades without any appropriate treatments and it is very likely that long Covid patients (50% of these patients are meeting the criteria for ME) will have a similar fate unless there is an urgent and drastic change in the level of research and funding they are both currently receiving.

    Not Recovered UK hopes that by taking out such prominent adverts, the campaign will start breaking down the stigma that surrounds long Covid and ME patients.

    Campbell said:

    Aside from raising awareness and calling for appropriate research and treatments, the billboards and their messaging are a push back on the minimising and harmful narratives surrounding them that these patients will be cured by exercise, diet or mindfulness techniques.

    It is time that attitudes towards ‘invisible illnesses’ are changed and follow the actual scientific literature regarding abnormalities found in these patient groups and acknowledge that these people are truly, genuinely sick who desperately need medical treatments.

    However, one billboard especially was of importance.

    In Swindon, Not Recovered UK placed it near to the head office of the UK’s Medical Research Council (MRC):

    The Medical Research Council: waiting for comment

    The group hoped it would prompt a response from the MRC – with people on social media asking it to take notice:

    However, the MRC was not forthcoming. So, Not Recovered UK reached out to the organisation. It said:

    even though this billboard location was selected specifically for capturing the attention of the Medical Research Council within the UKRI building in Swindon, we have unfortunately had no acknowledgement from them even with our community tagging them in various Tweets over the last week.

    The group noted to the MRC that it has:

    had to witness a great deal of inaction from the UK government when it comes to biomedical research for Post Covid and ME… little has been allocated to researching the stated conditions, much of which has not been spent on biomedical research but rather on – at best – ineffective and due to post-exertional malaise (PEM) often even harmful therapies such as Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT).

    Most importantly, as of today, there are still zero approved treatments for both conditions. Given the amount of suffering as well as economic costs these severe illnesses cause, this is unacceptable.

    We would like to kindly request an official comment from the UK Medical Research Council on our billboard campaign as well as on the – in comparison to other (similar) diseases – chronically low funding allocated to Long Covid and ME/cfs.

    ‘We are funding long Covid and ME research’… but only just…

    The MRC did actually respond to Not Recovered UK. Dr Jonathan Pearce, director of strategy and planning at the MRC, said:

    UK Research and Innovation (UKRI)’s Medical Research Council (MRC) funds research across the research and development pathway to improve human health, including fundamental and mechanistic biology, and translational research through to early phase clinical trials. Applications are judged in open competition and the primary considerations in funding decisions are scientific quality and importance to human health.

    MRC has prioritised research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for a number of years, co-funding a Priority Setting Partnership to identify research priorities in this area and maintaining an open highlight notice to encourage ME/CFS research. In addition, in 2020, we joined the National Institute of Health and Care Research (NIHR) to support research into Long-COVID.

    Since 2020, MRC and NIHR have collectively awarded over £50 million for research on ME/CFS and Long-COVID. This includes:

    • Four studies to identify the causes of Long-COVID and effective therapies to treat people who experience chronic symptoms of the disease.
    • DecodeME, which aims to find genetic risk factors of ME/CFS to better understand the disease and ultimately to find treatments.

    In addition, MRC has supported a study to investigate the long-term impacts of lung damage after COVID-19 and the role of autoantibodies in ME/CFS.

    We continue to encourage high-quality research proposals across all our funding opportunities for these important areas.

    Of course, £50m for research is a miniscule amount of money compared to other diseases.

    For example, from 2007 to 2015 the UK government and UK research bodies spent £82.20 per patient, per year on multiple sclerosis. The equivalent figure for ME was £4.40. Between 2015 and 2021 MS funding increased to £164 per patient, per year. For long Covid, between October 2020 and May 2023 the equivalent of just £10.75 per patient, per year, was spent on research. 

    This lack of parity in funding for both conditions is one of the main points of the campaign. So, Not Recovered UK is calling for the government and research bodies to release £100m a year to fund long Covid and ME research. 

    ‘Disheartened and upset’

    Pearce and the MRC’s response left Campbell disappointed and angry.

    He told the Canary:

    I’m really disheartened and upset for myself and everyone in the community that even though these patients are fighting for their lives and literally self funding their own billboards in a cry for help, the MRC can’t specifically acknowledge these efforts or address concerns that patients have with the lack of research funding and allocation of these funds.

    If expensive billboards in public spaces aren’t enough to show how desperate we are for their acknowledgement and understanding then what is it going to take?

    For the MRC to effectively do a copy and paste job from its website as a response to chronically ill people paying for their own campaign because, in part, of the MRC’s lack of funding for research is staggering.

    It shows that, despite the warm words, the attitudes from medical organisations towards post-viral illnesses haven’t changed – which is exactly why Not Recovered UK’s billboards are so important and desperately needed. However, it’s sad that chronically ill people are having to pay for their own awareness campaign in the first place.

    Featured image and additional images via Not Recovered UK

    By Steve Topple

    This post was originally published on Canary.

  • More than a year after the federal government first cut off her disability benefits, Denise Woods drives nightly to strip malls, truck stops, and parking lots around Savannah, Georgia, looking for a safe place to sleep in her Chevy. Woods, 51, said she had rented a three-bedroom house she shared with her adult son and grandson until March 2022, when the government terminated her disability…

    Source

    This post was originally published on Latest – Truthout.

  • Boris ‘the liar’ Johnson’s non-apology to people living with long Covid at the Covid Inquiry has angered many people. The former PM’s dismissal of the disease as “bollocks” arguably led to the epidemic of debilitating chronic illness we’re now witnessing. However, is he solely to blame? Or was he a victim of psychiatric propaganda of the highest order that we now need to consign to the dustbin of medical history?

    Johnson: sorry/not sorry

    As the Canary previously reported, on his first day at the Covid Inquiry, Johnson couldn’t apologise properly to long Covid patients for calling their disease ‘bollocks’. Instead, the inference was that he was sorry that he got caught doing it. Johnson said:

    I regret very much using that language and I should have thought about the possibility of future publication.

    ‘Thought about the possibility of future publication’? Translate that from ‘Johnson doublespeak’, and you get ‘I should have thought about whether I’d get caught‘.

    However, while Johnson is undoubtedly a nasty, arrogant, and condescending piece of work – is he really solely to blame for the stigma around long Covid? Not really. We need to think of Johnson more as the monkey – because there are organ grinders who have directed him to this point of view in the first place.

    ME: ground zero of ‘all in your head’

    Myalgic encephalomyelitis (ME) is one of the ‘ground zeros’ when it comes to the ‘all in your head’ slander around chronic illness. Some people refer to ME as chronic fatigue syndrome (CFS). It is a debilitating and poorly-treated chronic, systemic neuroimmune disease that affects every aspect of the patient’s lives. You can read more about ME symptoms here.

    The disease has been at the centre of various scandals for decades. These include medical professionals saying it was a psychological illness – that is, that it’s ‘all in people’s heads’. Spoiler alert: ME is in no way psychological. You can read the endless articles I’ve written showing this fact here.

    However, these narrative have stuck – and entered the psyche of people like Johnson. This is partly because the idea of psychomatic illness is entrenched in the medical profession. However, it is also because of just who is pushing the ‘all in your head’ junk science. I say junk science because the fraudulent PACE Trial, which cemented the idea that ME was psychosomatic, was a near textbook case of it; that is:

    faulty scientific information or research, especially when used to advance special interests.

    PACE Trial: a hotbed of scientific crooks

    In the case of PACE Trial, the Canary has reported extensively on how:

    Overall, patients, advocates, politicians, and many medical professionals believe the PACE Trial was a con to keep ME as a psychological illness, and to deny people benefits and private health insurance. However, it is who is behind PACE Trial that is key to understanding just why people like Johnson lap up the ‘all in your head’ agenda for post-viral illness.

    The people at the centre of PACE Trial were:

    • Michael Sharpe – emeritus professor of psychological medicine at Oxford University.
    • Trudi Chalder – professor of Cognitive Behavioural Psychotherapy at King’s College, London.
    • Peter White – former professor of psychological medicine at Queen Mary University of London, adviser to the Ministry of Defence and the government’s Chief Medical Officer.

    Elitism versus hysterical patients

    These three have been virulent in their defence of their junk science – even after it was widely debunked. Yet still, they get away with it in some circles like the Guardian. Why? It’s elitism. Sharpe, Chalder, and White have positions at some of the best universities in the UK; in the case of White, they’ve had the ear of government at times, and in the case of Sharpe their peers have repeatedly awarded them for their endeavours.

    So, if it came down to the junk science of esteemed professors versus ‘hysterical’ patients – the junk scientists will always win. PACE Trial has directly and indirectly instructed the thinking of countless medical professionals, from consultants to local GPs – to the severe detriment of chronically ill patients whose symptoms they perceive as ‘medically unexplained’. This include ME, but also countless other conditions where a part-psychiatric approach is now considered normal.

    However, there are plenty of respected medical professionals who don’t believe ME (and long Covid for that matter) are ‘all in people’s heads’. Therefore, this still doesn’t entirely explain Johnson’s views. So, how is it that the former PM has lapped up this narrative hook, line, and sinker?

    Wessely: the high priest of junk science

    Enter Simon Wessely. Now, him and Johnson don’t appear to be acquainted. However, Wessely is one of the highest-profile medical professionals in the UK. He reviewed the Mental Health Act for Theresa May’s Tory government; the NHS recently appointed him to its board, and David Cameron’s coalition government awarded him his ‘sir’ for services to military healthcare. It is that last point which is crucial.

    Johnson’s ‘Gulf War syndrome stuff’ comment about long Covid didn’t come from his Eton-addled brain by itself. Wessely is of course the person who (with Chalder, no less) perpetuated the myth that Gulf War syndrome was somehow psychomatic – in the same way the pair helped ME to become ‘all in people’s heads’. As he said himself:

    the transmission of rumour was a significant part of the very construction of the condition itself.

    We now know this is – to coin a phrase – ‘bollocks’. Gulf War syndrome was caused by the release of Sarin gas, as researchers concluded in May 2022. Yet for over 30 years, high priest Wessely and his junk science acolytes perpetuated the falsehood that the disease was ‘all in people’s heads’ – and it stuck in Johnson’s, too. Again, we have to ask the question why?

    Elitism pervades the establishment – both political and medical

    It’s elitism, once more. Wessely is a world-renowned psychiatrist who has had a glittering career for decades. Gulf War syndrome has been one of the most highly-publicised yet unexplained diseases in living memory, making repeated newspaper headlines. Wessely gave the military, governments, veterans, and the wider public, revelatory answers – and hope.

    Combine these things, and mud sticks. It would seem impossible that a man like Wessely could have built a career off the back of demonstrable nonsense. Therefore, his opinions must be correct.

    Ironically, it is the phrase that Wessely used himself to describe Gulf War syndrome that, when adjusted, best describes his affect on the medical profession, and wider society’s, opinion of chronic illnesses that have no known cause:

    the transmission of rumour was a significant part of the very construction of the… [falsehood] itself.

    As a society, we are conditioned to believe that those who have reached the pinnacle of education and careers are somehow better than us mere mortals. We’re supposed to celebrate them and their alleged achievements. However, in the case of Wessely – and Johnson (and arguably many other leaders in their respective fields) – these people should not be revered.

    Misplaced beliefs leaving the rest of us screwed

    Their self-serving self-importance, coupled with a misplaced yet arrogant belief in their own abilities and ideas, make them dangerous to the rest of us. ME and Gulf War syndrome patients can testify to this – and sadly now, long Covid patients can, too.

    However, Johnson is really only the monkey of the long Covid ‘bollocks’ trickery. Wessely was one of the most instrumental organ grinders of the now-failing notion of psychomatic illness – and clearly, even former PMs were dancing to the tune.

    That’s not to say Johnson isn’t guilty of leaving millions of people disabled by long Covid through inaction, lies, and prejudice. However, his views are just another symptom of an illness that crooked psychiatrists have spent years fomenting. If one things comes out of the Covid Inquiry, it’s that the idea that illness can be ‘all in people’s heads’ is consigned to the dustbin of medical history.

    Featured image via the Telegraph – YouTube

    By Steve Topple

    This post was originally published on Canary.

  • Boris Johnson’s first day at the Covid Inquiry was underscored by his inability to apologise to long Covid patients properly – summing up his arrogance and contempt for most of the public.

    ‘Gulf War syndrome’ ‘bollocks’ says Johnson

    As the Canary previously reported, earlier in the Covid Inquiry a lawyer for some Long Covid groups revealed that Johnson had written that the disease was “bollocks”. He also noted the former PM wrote it was “Gulf War Syndrome stuff”.

    Now, we know that Johnson didn’t really believe this – but only if you believe him in the first place. This is because on Wednesday 6 December lawyers questioned him again on long Covid. As Press Association (PA) reported, Hugo Keith KC asked Johnson if it was “fair” that he’d been “less than sympathetic” to people living with long Covid, and whether or not it was fair he “questioned” the existence of the illness. Johnson said:

    [It’s] not really [fair], no.

    The words that I scribbled in the margins of submissions about long Covid have obviously been now publicised and I’m sure that they have caused hurt and offence to the huge numbers of people who do indeed suffer from that syndrome.

    And I regret very much using that language and I should have thought about the possibility of future publication.

    ‘Thought about the possibility of future publication’? Translate that from ‘Johnson doublespeak’, and you get ‘I should have thought about whether I’d get caught‘.

    Johnson also claimed the ‘Gulf War syndrome/bollocks’ comments were him trying to “get to the truth of the matter” of what long Covid was. He also said advisors only gave him a “proper” paper on the disease in summer 2021. This is despite former health secretary Matt Hancock claiming to the Covid Inquiry that the government began a “messaging campaign” in October 2020.

    Long Covid: hedge your bets, apparently

    Despite this, PA reported that:

    Johnson “continued to make disparaging references to whether or not this is Gulf War syndrome stuff” in February 2021, and again in June 2021.

    The former PM also sent a WhatsApp message in February 2021, saying:

    Do we really believe in long Covid? Why can’t we hedge it more? I bet it’s complete Gulf War Syndrome stuff.

    So, we know that Johnson is not really sorry about his comments – but we don’t know if he’s any closer to accepting that long Covid is actually a real, physical disease (just like Gulf War syndrome is). Typical Johnson, really – no one is any the wiser even after listening to him.

    Only apologising because he got caught

    PA reported that chief executive of Long Covid Kids Sammie McFarland said of Johnson’s testimony:

    Boris Johnson didn’t apologise for using the language because it was wrong; he only apologised because he got found out and his actions have caused years of bullying and stigma for people suffering from Long Covid. We need a sincere apology.

    But more than that we need action and the inquiry to create meaningful and impactful recommendations going forward.

    Johnson also said that people think they are unwell. He needs to recognise that this is a real disease and a consequence of the pandemic alongside the unfortunate deaths and hospitalisations.

    McFarland is correct: Johnson is only sorry he got caught. What other non-apologies (or in his words, ‘bollocks’) he’ll spout on his second day of evidence to the Covid Inquiry is anyone’s guess – but it’s unlikely to be any comfort to the millions of people affected.

    Featured image via the Daily Mail – YouTube

    By Steve Topple

    This post was originally published on Canary.

  • Boris Johnson will be giving evidence at the UK’s Covid Inquiry into the coronavirus pandemic and the then-government’s response on Wednesday 6 December. However, many people are expecting little more than more spin, lies, and excuses from the former PM. Not least among this is campaign group Long Covid Advocacy – who is summing up Johnson’s appearance as “What Boris Inquiry Bollocks Next?”

    Long Covid: ‘bollocks’ said Johnson

    As the Financial Times reported:

    Johnson will be forced to revisit and explain how his government responded to coronavirus on Wednesday as he appears before the UK’s official inquiry into the pandemic.

    The chaos at the heart of Britain’s handling of Covid-19 has been laid bare in recent weeks, with testimonies describing a “toxic” culture in Downing Street and how Johnson was “bamboozled” by scientific data.

    Allies of the former prime minister said he would apologise for mistakes made by his administration but would robustly defend its successes. Johnson’s team is aware he faces many serious claims, but believes he has answers that will help rehabilitate his reputation.

    ‘Rehabilitating’ Johnson’s reputation is a ridiculously gargantuan task – not least in the eyes of people living with long Covid, and other post-viral illnesses like myalgic encephalomyelitis (ME). This is because the public found out earlier in the inquiry that Johnson referred to the idea of post-viral illness as “bollocks”. As the Canary reported at the time:

    Anthony Metzer KC is the barrister representing the groups Long Covid Kids, Long Covid SOS, and Long Covid Support. During the opening day of the second module of the Covid Inquiry, he presented on behalf of the groups – and made a staggering revelation. Metzer told the public inquiry:

    “In October 2020, while the Department of Health and Social Care [DHSC] was publishing guidance on Long Covid and called for recognition and support for people with long Covid, then Prime Minister Boris Johnson scrawled in capitals that long Covid was ‘bollocks’.

    “Mr Johnson has admitted in his witness statement that he didn’t believe Long Covid truly existed, dismissing it as ‘Gulf War Syndrome stuff’”.

    He summed up by saying:

    “The UK’s senior most decision makers were dismissing, diminishing and disbelieving the very existence and risk of Long Covid”.

    So, Long Covid Advocacy has hit out ahead of whatever ‘bollocks’ Johnson will try to spin.

    No protection, no warning, and now no cure

    It’s launched a hard-hitting image for Johnson’s Covid Inquiry appearance:

    A distorted image of Boris Johnson with the wording "Long covid bollocks. 2 million affected. No protection. No warning. No cure."

    The group said in a statement:

    It is estimated that nearly two million people have long Covid due to a dismissal of its existence at the highest echelons of power.

    There was:

    • No Protection – we were not given the tools or information to protect ourselves – respirator masks, ventilation guidance, air filters.
    • No Warning – we saw no public health messaging.
    • No Cure – there is no effective treatment or cure for long Covid.

    We are seeing the same mistakes where the medical & political establishment ‘poo poo’ & dismiss certain illnesses, such as Gulf War syndrome & ME, that they don’t understand. This needs to change.

    This is a multi system, biological & devastating disease. It has a quality of life equivalent to Parkinson’s and worse than stage 4 lung cancer.

    We need the political establishment to get real and act.

    Again, as the Canary previously reported and the Covid Inquiry noted, post-viral illness was entirely predictable – yet Johnson and the government chose to ignore the threat. However, at the heart of this is the devastating impact the PM’s decisions have had on people now living with the disease.

    Ravi Veriah Jacques lives with long Covid. They said:

    Where once my life traversed several countries, it now consists of several rooms. Long Covid has stolen almost everything I loved – performing the violin, jumping into relationships, producing academic work, seeing old friends. I’m almost three years in. This cannot be the rest of my life.

    Amy Boylan said similar:

    My life stopped when I caught Covid in March 2020. It filled my blood with persistent clots and badly damaged my immune system. I can’t walk or work, care for myself or my kids. There are millions like me, globally. We desperately need research and treatment to restart our lives.

    Chronic illness: decades of dismissal

    Moreover, people living with ME – which is very similar to long Covid and which nearly 50% of people living with the latter meet the clinical criteria for – have seen this all before. ME is generally a post-viral illness. Like that and Gulf War syndrome, because of – yet often also in spite of – the lack of knowledge on just why people get it, many medical professionals have psychologised ME. So, Long Covid patients having to endure medical professionals and the state dismissing their illness was sadly predictable.

    The Canary wrote in November 2020 that:

    Long Covid patients may get a similar whitewashing of their illness as people with ME historically have.

    Kirstie Sivapalan lives with ME. She said:

    Living with ME, I find it both hopeful and frustrating there is more focus on Long Covid research. I believe we will get long-awaited answers that the medical community can no longer dismiss, but patients with ME are still the poor cousins. It’s disheartening to watch research repeated, heralded as new, and decades of experience ignored.

    No more long Covid bollocks. People want their lives back.

    So, Long Covid Advocacy and the community are calling for:

    • Urgent moonshot biomedical funding – £100m a year as stated by the Coronavirus All Party Parliamentary Group.
    • A ReCOVer-like fast-tracked treatment based study.
    • Prevention to stop endless reinfection – monitoring, filtration, and ventilation legislation.

    Claire Higham is the founder of Long Covid Advocacy. She said in a statement:

    Catastrophic mistakes are being exposed in the UK Covid Inquiry that led to mass death, disability, and devastation. Yet we are not out of the woods. People are still not recovered, still dying, and still contracting long Covid. We need prevention, public health messaging, and an emergency research Moonshot for long Covid based on firm biological principles.

    Of course, a lot of this could have been avoided if Johnson hadn’t thought post-viral illness was “bollocks”. Whether or not he will have the self-awareness to admit his arrogance at the Covid Inquiry is debatable. However, for nearly two million people, he’s already done the damage.

    Featured image and additional image via Long Covid Advocacy

    By Steve Topple

    This post was originally published on Canary.

  • As Israel pauses its bombing of Gaza during a temporary cessation of violence, both it and Hamas have been releasing hostages. However, it is likely that Israel’s attempted genocide in Gaza and the Occupied Territories will continue after the so-called temporary ceasefire ends.

    Israel has already killed nearly 15,000 people in Gaza, including over 6,100 children – and injured more than 36,000 more. Moreover, it has obliterated much of the territory, destroying vital infrastructure and homes. It is unlikely that Israel will end there – hence people’s objections to a ceasefire in the first place. Moreover, journalists are reporting Israel has breached the ceasefire, regardless – as its forces fired on Palestinians trying to return to Northern Gaza, killing two people.

    So, with that in mind the Canary has spoken with members of Gaza’s paracycling team, who are on the ground there. They are among over 150,000 people in Gaza – around 7% of the population – who are disabled. This also includes over 3,000 amputated people – one of the highest rates on the planet.

    The Gaza Sunbirds have given the Canary their insights into what life is like under Israeli occupation, how it has been for people during its onslaught, and what their hopes for the future are.

    Gaza Sunbirds: paracyclists and humanitarians

    The Gaza Sunbirds are a paracycling team founded in Gaza two years ago with the goal of competing in the 2024 Paralympics. They are amputees who lost legs when either peacefully protesting at the 2018-19 March of Return or in previous attacks by the Israeli Occupation Forces. Over the years, they have been affected by ongoing bombings, food shortages as a result of the 16-year siege, and the destruction of the International Cultural Centre in 2018 where they managed their sports project – all at the hands of the Israeli state:

    Mohammed Abu Julia Gaza Sunbirds local manager in Gaza in October 2023

    Now, facing realities of Israel’s genocide, the Gaza Sunbirds are fighting for their community’s right to live, by organising and distributing provisions in the Southern city of Rafah.

    At the time of writing, they have distributed $9,000 of food and supplies, 300kg of bread, $3,700 of tinned foods, flour, blankets, baby essentials, and sanitary products. You can donate to their Gaza Emergency appeal here. They are also launching a campaign called Athletes Against Apartheid. They are rallying the global sporting community to join them in demanding a ceasefire and measures that will ensure a safe and dignified existence for Palestinians. Follow the campaign here.

    “I dreamt of becoming a champion with both legs”

    Alaa Al-Dali is the Gaza Sunbirds’ team captain. He founded the project in 2021 and was the first professional paracyclist in the Gaza Strip. 2021 was a difficult year in Gaza – as Israel killed hundreds of people during an illegal bombing campaign. From this, Al-Dali decided to do something positive after the trauma of years of occupation – however his own story is equally harrowing. He told the Canary:

    I fell in love with cycling since I was a child and started training as a road cyclist when I was 15.

    Gaza is very small, and I only have one road that is approximately 35km for training: those of you who cycle will empathise with me and my teammates doing the same road up and down for hours to train! But it doesn’t matter, we do it for the love of cycling.

    It paid off. I was selected to represent Palestine at the Asian Games in 2018. I was scared I could not go: in all my life, I was never allowed to leave Gaza, not for pleasure nor for competing internationally. This is why, few months before the games, I proudly participated in the March of Return protest at the border between Israel and Gaza, where I was shot by an Israeli Security Force sniper. As a result, I lost my leg.

    Now, my biggest dream is to create a paracycling team out of the ashes and we aim big: the Paralympic Games. I want everybody to see us cycling on one leg and feel the power we have: we are not a burden to our society, we will make Palestine proud. We ride for freedom.

    I dreamt of becoming a champion with both legs. After my amputation, I became determined to be a champion for Palestine with one. 

    Gaza Sunbirds cycling on a road. IT is a sunny day and there is greenery by the side of the road.

    However, those dreams have been put on hold since Israel started committing its latest round of war crimes in Gaza in October 2023.

    Living under Israeli genocide in 2023

    As the Canary previously reported, life’s essentials have been in a perpetual state of precarity thanks to Israel. It has intentionally left Gaza with limited water, food, fuel, and medical supplies. Plus, as winter approaches there is the added threat of disease. However, Israel’s actions have had further implications that just this.

    Al-Dali told the Canary:

    Thankfully I’m OK, but the situation in the neighbourhood is tough. What’s come is very difficult on us. They were bombing us all night. It was so violent in our area. A lot of people have been murdered. The situation is very difficult where we are. In our houses, we are not safe, there is no safety outside of the house. Even the UN schools – we wanted to run to them… they bombed them. The situation is very very difficult. The dead, there’s no-one to remove the bodies or bury them. The situation isn’t reassuring. Thankfully we have been OK up to now. I hope that lasts.

    Mohammed Abu Asfour is a Gaza Sunbirds athlete. He has also been OK so far. He told the Canary:

    I escaped with my bike from home. My family is in the school (now a shelter). I first helped them evacuate before me, then I followed them using my bike. The bike helped me escape the war although it was bombed and ruined. There’s blood of injured people on it, it was seriously targeted. We have survived. Praise to Allah.

    Killing journalists – and friends

    But so many people have not been so fortunate. Specifically, Israel has killed 46 journalists since its onslaught began. Abdel Hakim Awad is the Gaza Sunbirds’ social media coordinator. Israel killed his friend, who was a journalist. Awad told the Canary:

    Wallah, my friend was martyred. He was going to photograph. He went to take a photograph, he was a journalist. He had nothing to do with any of this.

    The catastrophe is that my house is on the border. The number of dead Palestinians around the border is horrifying. Just horrifying. One plane came and wiped them all out. The resistance is almost done with fighting now Israel has launched attacks.

    Right now, like 30 mins ago, they hit a residential building with civilians. And then they attacked.

    Do you hear the planes, the Apache helicopters? People are running from across the border saying there’s so many martyrs and the ambulances can’t even reach them.

    Do you hear the explosions? The internet’s been cut. They bombed the internet lines.

    We’re scared but we don’t know exactly where to go yet. Where we are has a lot of danger, but wherever we go it has a lot of danger.

    It is what it is. Everyone from the North has fled South anyway. Where are we going to go? I mean we’re definitely not going to stay on the streets. The only choice we have right now is to leave the upper floors and all gather on the ground floor until we get the decision on what to do. If the bombing gets much worse, then we’re going to have to leave and hide in a hospital or school. My god, this is our situation regardless of what we want.

    Moreover, the toll Israel’s actions have taken on children has been particularly devastating. Not least is the sheer number killed, but also the lasting mental health issues and trauma these young people live with.

    ‘She wanted to die’

    Mohammed Abu Julia is the Gaza Sunbirds’ team manager. He told the Canary:

    A little girl appeared while I was driving. She stood right in front of my car. ‘What’s happening’ I called out, ‘what’s your name, baba, what’s your name?’ I’m talking to her from the car window.

    She tells me her name is Najwa. So I asked her ‘why did you jump in front of the car, if I was speeding I would have hit you!’

    She tells me ‘I want to die.’

    I asked her ‘baba, why do you want to die? You’re a good girl, you still have dreams’. She said ‘no, I want to die because I’m horrified.

    Even kids are scared now from the noises and the news they hear, from the things they see. A child as young as eight or nine years old. She tells you I want to die. She tells you I want to die because it is better than the fear I am living. This is something that’s unnatural and inhumane.

    For the team collectively, it told the Canary that some of its members are still missing, too:

    We are not safe. There is no food. No Water. The darkness of the night is lit only by the fires of beasts that scream above us. You cannot use the actions of a few to dehumanise us with collective punishment. Days have passed and we have not yet heard from some para-cycling team members.

    Most Gazan’s are young like us and have never done anything to hurt anyone. 50% of our population is under the age of 18. The policies of war and siege got us here, repeating history by providing military aid to encourage onslaught will only bring more harm.

    However, amid the carnage people still do what they can to support each other – not least the Gaza Sunbirds.

    Keeping communities alive

    The team has been distributing life’s essentials to local communities. It told the Canary:

    As the ground offensive raged on, more than 6,100 children have lost their lives. Children in Gaza face atrocious conditions. The mothers are no longer able to produce milk due to the impact of starvation. Kids remain in the same clothes in which they were injured with nothing to change into. Formula milk can only be mixed with contaminated water.

    So, our athlete Abu Asfour trialled an initiative of care packages for kids. The team distributed 50 parcels in his local area. Moreover, he organised and supported a hot meal programme around Khan Younis to feed more than 900 people. It is unclear if we can keep doing hot meals, but this hasn’t stopped us from distributing close to 150 food parcels a day feeding over 2250 people.

    While we are happy to help every soul, this support is hardly able to help 0.12% of the population. We need to end the siege and bring aid into Gaza. Even with our efforts, stores are losing stock.

    Al-Dali told the Canary:

    Some people started crying when they received the bread. Tears of joy. For bread. People were crying over receiving bread, something that was always available to us is now precious. People used to suffer from the lack of other things but not something as basic as bread. It was heartbreaking. It felt as if they were coming back to life receiving that bread.

    I was out and my wife and family were very afraid for me. They were afraid of getting bombed while I wasn’t there too. But it was important for me to help people and I was concerned about getting this bread to people in need.

    The Gaza Sunbirds cycling on a road. There is a tower block in the background and it is morning as the sun is coming up in the distance.

    It is this resilience in the face of horror which permeates Gazan society more broadly. The Gaza Sunbirds, meanwhile, are determined that Israel will not break theirs or their people’s spirits.

    ‘We are not leaving Gaza’

    Noor Abu Shamale is a Gaza Sunbirds’ athlete. He told the Canary:

    Regardless of what we are experiencing and there is no electricity or internet in Gaza, regardless of the destruction – the big destruction that feels like World War III – we are stronger than what we are experiencing. This is our country, we are not going to leave it. We will continue pursuing our dreams, regardless of what we are experiencing.

    Hazem Suleiman is another athlete of the Gaza Sunbirds. He said:

    Despite the bombardment and destruction and under the sounds of the bomber jets, we are continuing and we tell the world, “Here we are!” the Gaza Sunbirds team is still around. From the heart of Raffah in the South, we are continuing! With our love for cycling, we’re in Raffah and we’ve grouped up, and we repeat that this is our sport. We will reach the Olympics! We will represent Palestine!

    Al-Dali summed up by saying:

    Away from the despair of war, despite the bombing and the siege, we’re out for training today with captain Alaa and Gaza Sunbirds…the team is happy that they can get back to their favourite sport. This war on Gaza will end eventually. We will get our lives back. We will get back to cycling. Despite the bombardment and siege we are still here. We will keep going. 

    And as the Gaza Sunbirds team collectively said:

    We will not lose hope in life. We will continue fighting for our communities right to thrive. And where the world leaves us alone, we the amputated youth of the camps have risen on one leg to support our people. 

    The Gaza Sunbirds on their bikes, stationary and lined up. It is nearly sunset. You can see the Mediterranean sea in the background. Their team leader is standing talking to them.

    The team also have messages for the world they want to share.

    Gaza Sunbirds: messages to the world

    Suileman said:

    There is no life here in Gaza, they cut our electricity and water, 90% of our internet is out. I hope my message reaches every human heart in the world. Our loved ones are gone, our friends and our family have gone. They were killed in the most brutal, indiscriminate way. This is the first time it has been this bad. This is my message to the world: support Gaza, stand with Gaza. We just want to live.

    The current cessation in Israeli aggression is only temporary. People should not be fooled that the silencing of the bombs is in some way progress. Even if Israel’s current genocidal campaign ends, it is likely it will only be until the next one begins. Meanwhile, in the Occupied West Bank Israel continues to brutalise and subjugate Palestinians day in, day out.

    Overall, the team collectively told the Canary:

    We are fighting not only physical warfare, but also psychological warfare that will leave trauma for generations to come. Let this be our turning point, our call for immediate ceasefire and our unwavering commitment to end the genocide.

    We need the world to stand up for us now and demand an end to these genocidal policies and narratives about our people. Like you, we have dreams and ambitions. Despite all that has been taken from us, we approach every day with peace and love in our hearts.

    We have a vision of uniting our people through sports. We believe in a better tomorrow. This starts with real change, it starts with recognising our humanity. Recognise that we don’t deserve to die. If we cannot address the root causes nothing can be fixed.

    No more war. No more kidnapping our kids. No more siege. No more fear. Our bloodshed will only end when we have our rights. 

    The Gaza Sunbirds stationary and lined up looking at the camera. It is a sunny day with a clear blue sky. The team are near the beach.

    The Canary would like to thank Carina at the Gaza Sunbirds for her help in coordinating this article. We would urge you to support the team’s crowdfunding page for emergency aid here, and their campaign Athletes Against Apartheid here.

    Featured image and additional images via the Gaza Sunbirds

    By Steve Topple

    This post was originally published on Canary.

  • The new 5% higher price cap on energy bills announced on Thursday 23 November means people will pay more this January than any winter before and this is set to hit those with disabilities the hardest. That’s the verdict of one charity representing chronically ill and disabled people – the Spinal Injuries Association.

    Energy bills: going up again

    From January, an average energy bill will be going up by £94 a year:

    However, this rise isn’t set across the board. Former Green Party leader Natalie Bennett noted that:

    And as charity Scope tweeted, chronically ill and disabled people are hit the hardest by energy price rises:

    So, the Spinal Injuries Association who represent those with spinal cord injury are calling on the government to offer more help to the most vulnerable with their energy bills.

    ‘Concerned for people’s safety’

    Last winter every home received a £66-a-month government reduction. However with no additional support this winter and benefits falling short the charity claims many with spinal cord injury will suffer unnecessary physical pain and anxiety with some having to turn to debt and food banks.

    A spokesperson for the Spinal Injuries Association said:

    We are concerned for the safety of many who due to spinal cord injury are unable to regulate their own body temperature in the same way.

    As heating bills soared last winter, many of these people reported pain levels increasing due to being unable to keep warm at home with some resorting to wearing ski clothes indoors or wrapping themselves in blankets and duvets and staying in bed all day, rather than turning on the heating.

    The cold adversely effects pain levels and the ability to walk for many with spinal cord injury, with some struggling to actually move around their own home. For them simply turning the heating down or switching off essential equipment is not a safe option. Worrying about how to make ends meet is not healthy for anyone and neither is staying in bed for most of the week so you can turn off the heating, with many telling us they feel angry, upset and isolated.

    The charity explained that one person reported spending £430 a month on gas and electricity last winter in order to survive which was not sustainable and that they were petrified and scared to death by todays announcement. Many chronically ill and disabled people have no way of increasing their income and are worried about how to absorb these additional costs next year.

    The Spinal Injuries Association is supporting other charities including Scope who are calling for a social tariff on energy offering a discounted bill for those who face higher energy costs. This would ensure that those in the greatest need such as the 50,000 people across the UK with spinal cord injury can live safely and comfortably in their own home this winter.

    Featured image supplied

    By The Canary

    This post was originally published on Canary.

  • Campaign group Disabled People Against Cuts (DPAC) has organised an emergency protest outside parliament. It happening today (Friday 24 November) at 6pm. The protest is broadly over the Tories’ benefit changes and the Autumn Statement – but specifically one minister’s comments. Chronically ill and disabled people and their allies are urged to get involved.

    DWP: stick your changes up your fucking arse

    As the Canary recently reported, chancellor Jeremy Hunt has pushed through punitive measures for the Department for Work and Pensions (DWP) via his Autumn Statement. These include:

    • Work Capability Assessment (WCA) to be tightened, under the guise of ‘reflecting home working’. Hundreds of thousands of people could lose their benefits.
    • Claimants in England and Wales deemed able to work who refuse to seek employment to lose access to their benefits and extras like free prescriptions.

    Chronically ill and disabled people have been horrified. As one person told the Canary:

    The ‘Back to Work Plan’ will lead to more people… dying and our conditions deteriorating through forcing disabled people into job search activity, looking for jobs that we cannot do and cannot cope with due to our medical conditions

    However, some Tory ministers’ comments have been equally disgusting. Hunt for example recently said:

    Anyone choosing to coast on the hard work of taxpayers will lose their benefits.

    But it was Laura Trott who took things to another, even more despicable, level. As the Guardian reported, Trott – who is chief secretary to the Treasury – told Sky News:

    Of course there should be support for people to help them into work but ultimately there is a duty on citizens if they are able to go out to work they should. Those who can work and contribute should contribute.

    So, DPAC is fighting back with a protest called “You can stick your fucking duty up your arse”:

    “You can stick your duty up your fucking arse”

    The group said said in a statement:

    Laura Trott’s recent comments about the conservative party’s latest welfare plans have are just downright bloody insulting.

    Telling disabled people they have a “duty as citizens” to work, after what they have put us through in the last 13 years is an insult to everyone of us who have survived since they came to power.

    Trott was happy to dismiss our valid fears about the Government’s latest attack and the harm it will cause.

    Where was the conservative party’s sense of duty when they imposed austerity-cuts to vital public services including:

    • Social Care
    • The NHS
    • Local Councils
    • The Independent Living Fund
    • Disability Benefits
    • Disabled Students Grant
    • The Access to Work Fund
    • And many many other vital services?

    And at the same time cut benefit level and introduced the Bedroom Tax, capped benefit payments and brought in the two child limit.

    All of which created isolation and destitution for the lucky – and cold dark graves for too many unlucky victims of Tory cruelty.

    Where was their sense of duty when millions were living in fear of the dreaded brown envelope coming through the door because of the Work Capability Assessment and the dehumanising, degrading process that meant for them?

    Where was their sense of duty when they left 100s of 1000s of disabled people to die during Covid, while they stepped over the corpses on their way to their parties?

    There was no sense of duty, only self interest and greed.

    Well, don’t tell us what our duty is – when you so flagrantly failed in yours.

    We didn’t go to the country and ask for their vote, their trust and then let everyone down.

    It was your duty to respect and empower us as equal citizens with a stake in our society.

    Not to take every opportunity to attack, demean and other us.

    You failed in that duty.

    Don’t dare to tell us what ours is.

    You can stick your fucking duty up your arse.

    If you are able to support DPAC’s protest in person, get to parliament at 6pm on 24 November. Or, you can join in online using #ToryCutsKill.

    Featured image via

    By Steve Topple

    This post was originally published on Canary.

  • Disabled people in Sheffield say they are not ‘coasting’ on benefits and have slammed their demonisation, in response to recent comments made by the Chancellor, Jeremy Hunt. Hunt’s comments relate to the Department for Work and Pensions (DWP) ‘Back To Work Plan’, announced in the Autumn statement.

    DWP changes forced through by Hunt

    As BBC News reported, Hunt cemented weeks of rumours over changes at the DWP. Some of his new measures include:

    • Work Capability Assessment (WCA) to be tightened, under the guise of ‘reflecting home working’. Hundreds of thousands of people could lose their benefits.
    • Claimants in England and Wales deemed able to work who refuse to seek employment to lose access to their benefits and extras like free prescriptions.

    Hunt preceded the budget by saying on 16 November that:

    Anyone choosing to coast on the hard work of taxpayers will lose their benefits.

    So, one group of disabled people has hit back.

    ‘We’re not ‘coasting’ on benefits, Hunt’

    David Hayes of Disabled People Against Cuts (DPAC) Sheffield said:

    When Hunt spoke of people ‘coasting’ on taxpayers’ money, people may have thought he was referring to corporations who dodge billions of pounds every year, bosses and shareholders of the numerous companies that governments are so fond of bailing out with public money to the tune of many billions and to whom they also give taxpayers’ money for crony contracts, people like Sunak’s wife, or MPs and ministers like himself who receive a very generous salary from the public purse each year along with heavily subsidised travel and meals, or The Royal Family who receive over £86m a year from the public, enough to support thousands of families.

    However, Hunt was dredging up his ideological obsession with punishing disabled people by forcing people who are unfit to work into work, something that not even the Victorian workhouse system tried to do. So we have the obscene sight of people who have everything taking everything off people who already have very little in order to fund tax cuts for the wealthiest.

    This is part of the government and DWP’s well-worn tactic of creating scapegoats to cover up and distract from the complete misery and mess they have created for most people in the country.

    We don’t believe most people are willing to keep falling for it. Like most people, disabled people face a cost of living disaster created by the government, trying to exist on incomes which are not keeping up with true inflation, whilst the companies for which governments really work are increasing their already obscene profits and shareholder payouts, living the high life and coasting off everyone else’s efforts whilst people from all walks of life are becoming destitute because of daily living costs.

    DWP: an ‘expression of hatred’ of disabled people

    Hayes continued:

    We’ve seen Cameron retread and reintroduced to the cabinet by Sunak, yet his Conservative/LibDem coalition introduced the needless, ideological policy of austerity on behalf of the bailed out financial institutions that caused the global economic crash in 2008.

    That ideology has caused hundreds of thousands of deaths through cuts to social security, the NHS, social care and other essential services, and it is still killing people.

    The ‘Back to Work Plan’ will lead to more people like myself dying and our conditions deteriorating through forcing disabled people into job search activity, looking for jobs that we cannot do and cannot cope with due to our medical conditions, whilst DWP boss Mel Stride whose salary exceeds £150k before expenses has threatened us with losing our NHS prescriptions if we don’t comply.

    The current disability payments regime has already caused many people to take their own lives and put thousands of disabled people into poverty. We know the sanctions system runs as a parallel penal system for claimants, treating us worse than prisoners, causing misery and impoverishment for people, a system that actually ends up costing the government money.

    None of this makes any sense other than as an expression of hatred from government for disabled people. The biology of disabled people’s bodies and medical conditions does not care about the ideologically warped views of government ministers; if we are unfit for work then we are unfit for work, and we are not going to be miraculously cured by a government white paper.

    We urge all disabled people, their families and supporters to resist the government’s plans to vilify disabled people as part of their ever regressive shift to the far-right.

    Featured image via UK Parliament/Jessica Taylor

    By The Canary

    This post was originally published on Canary.

  • New analysis published by the Trades Union Congress (TUC) on Tuesday 14 November – which is Disability Pay Gap Day – shows that non-disabled workers earn around a sixth (14.6%) more than disabled workers

    The analysis reveals that the pay gap for disabled workers across the board is £1.90 an hour, or £66.50 per week – over what the average household spends on their weekly food shop (£62.20).

    That makes for a pay difference of £3,460 a year for someone working a 35-hour week – and means that disabled people effectively work for free for the last 47 days of the year and stop getting paid today, on the day the TUC has branded Disability Pay Gap Day.

    “Zero progress” on disability pay gap

    The TUC introduced Disability Pay Gap Day in 2019. It is the day of the year when the average disabled person stops being paid, compared to the average non-disabled person.

    The pay gap has fallen since 2022, when the overall pay gap was £2.05 (17.2%) an hour.

    The new analysis shows that the disability pay gap is now higher than it was a decade ago (13.2% in 2013/14) when the first comparable pay data was recorded.

    And the gap is only slightly lower than when the TUC first launched Disability Pay Gap Day using 2016/17 data (when it was 15.0%).

    Disability pay gap by gender and age

    The new TUC analysis reveals that disabled women face the biggest pay gap. Non-disabled men are paid on average 30% (£3.73 an hour, £130.55 a week, or £6,780 a year) more than disabled women.

    The research also shows that the disability pay gap persists for workers for most of their careers. At age 25 the pay gap is £1.73 an hour hitting a high of £3.18 an hour, or £111.30 a week, for disabled workers aged 40 to 44.

    National, regional, and industrial disability pay gaps

    The analysis looked at pay data from across the country and found disability pay gaps in every region and nation of the UK.

    The highest pay gaps are in Wales (21.6% or £2.53 an hour), followed by the South East (19.8% or £2.78 an hour) and the East of England (17.7% or £2.30 an hour).

    The research found that disability pay gaps also vary by industry. The biggest pay gap is in financial and industrial services, where the pay gap stands at a huge 33.2% (£5.60 an hour).

    Unemployment

    Not only are disabled workers paid less than non-disabled workers, they are also more likely to be excluded from the job market.

    Disabled workers are twice as likely as non-disabled workers to be unemployed (6.7% compared to 3.3%).

    And the analysis shows disabled Black and Brown workers face a much tougher labour market – one in 10 (10.4%) Black or Brown disabled workers are unemployed compared to nearly one in 40 (2.6%) white non-disabled workers.

    Zero-hours contracts

    The Disability Pay Gap Day analysis shows that disabled workers are more likely than non-disabled workers to be on zero-hours contracts (4.5% to 3.4%).

    And disabled Black and Brown women are nearly three times as likely as non-disabled white men (6.0% to 2.2%) to be on these insecure contracts.

    The TUC says zero-hours contracts hand the employer total control over workers’ hours and earning power, meaning workers never know how much they will earn each week, and their income is subject to the whims of managers.

    The union body argues that this makes it hard for workers to plan their lives, look after their children and get to medical appointments.

    And it makes it harder for workers to challenge unacceptable behaviour by bosses because of concerns about whether they will be penalised by not being allocated hours in future.

    ‘Shameful’

    On Disability Pay Gap Day, TUC general secretary Paul Nowak said:

    We all deserve to be paid fairly for the work we do. But disabled people continue to be valued less in our jobs market.

    It’s shameful there has been zero progress on the disability pay gap in the last decade.

    Being disabled shouldn’t mean you are given a lower wage – or left out of the jobs market altogether.

    Too many disabled people are held back at work, not getting the reasonable adjustments they need to do their jobs. And we need to strengthen the benefits system for those who are unable to work or are out of work, so they are not left in poverty.

    Featured image via pxhere

    By The Canary

    This post was originally published on Canary.

  • Disabled activist Ellen Clifford has begun a legal challenge against the Department of Work and Pensions (DWP). It’s over the DWP’s failure to consult fairly or lawfully on plans for the Work Capability Assessment (WCA). Its proposed changes could cut income for some chronically ill and disabled people by £390 a month.

    DWP WCA changes

    Proposed changes to the WCA will result in reduced benefits for many disabled people who qualify for Employment Support Allowance and the health element of Universal Credit, by changing how the DWP awards points for conditions such as incontinence, immobility, and social anxiety.

    The DWP also proposes to make it more difficult for individuals who do not score enough points, but who have in any case been assessed as not being able to work or do related activity due to a substantial risk to their health, to qualify for additional benefit payments.

    Clifford’s lawyers at the Public Law Project say the consultation process on the WCA changes may be unfair and unlawful, because:

    • At eight weeks, the time period was too short.
    • Not enough information was provided for people to engage properly with the consultation – it did not make clear that some people could lose up to £390 a month or engage with other negative impacts on disabled people.
    • No reasonable adjustments were made for the fact that the most important consultees are disabled people who may need additional support to respond.
    • The consultation design shows no evidence that the secretary of state gave due regard to his Public Sector Equality Duty.

    ‘Unfair and unlawful’

    Clifford said:

    The DWP’s proposals will take much-needed money out of the pockets of disabled people. The proposals themselves do not stack up, and the way they have gone about consulting on the changes is unfair and unlawful. At the very least, the DWP must not pursue any proposals without proper, lawful consultation.”

    The consultation proposes changes to how the system assesses ‘mobilising’, ‘absence or loss of bowel/bladder control’, ‘coping with social engagements’ and ‘getting about’ activities, by removing them entirely or reducing the points awarded for the descriptors.

    People affected by these conditions may lose some benefits altogether or could be moved into a different benefit category which would require them to carry out mandatory ‘work related’ activities as a condition of receiving these benefits.

    Pushing more chronically ill and disabled people into poverty

    She continued:

    These proposals could harm many disabled people who rely on benefits, and push more disabled people into poverty.

    The consultation took place over less than eight weeks. Deaf and disabled people’s organisations – DPPOs – had no advance warning. There was another consultation process running at the same time, in addition to lots of other competing demands on the time of under-resourced DPPOs, of which DWP was well aware.

    For impairment-related reasons, I found it personally difficult to engage with the proposals within the short consultation period. All the DPPOs I spoke to who were able to respond said eight weeks was too short and didn’t give them the chance to consult properly with their members. A number of DDPOs (including DDPOs in the devolved nations) had to rely on a template response in support of key points made by DPO Forum England.

    This left them unable to provide DWP with the level of detail appropriate for a consultation on proposals with the potential to have such serious adverse impacts on the lives of disabled people. Some DDPOs were totally unaware of the consultation and others simply couldn’t respond at all within the given timeframe..”

    The DWP says that the increase in working from home means disabled people can access the world of work more easily. Research shows that disabled people are less likely to work from home than non-disabled employees, yet DWP made no attempt to engage with or even acknowledge those findings.

    The consultation papers do not make clear that the changes may mean a reduction in the amount of benefits a person receives, and that those impacted after undergoing a new Work Capability Assessment could become subject to mandatory activities in order to receive their benefits, and risk being sanctioned if they cannot comply with the conditions imposed.

    DWP make statements about how appropriate support will be available to help disabled people to get back into work, but there is no real detail on this, and they refer to existing projects like Access to Work (AtW). Difficulties accessing AtW consistent with my own personal experience have long been flagged by DDPOs without adequate remedy.

    ‘Life-altering consequences’

    Aoife O’Reilly, the Public Law Project lawyer acting for Clifford said:

    There are principles of fairness that Government departments must follow when carrying out consultations like this.

    The changes being consulted on will have life-altering consequences for disabled people. When you think about the diverse accessibility needs of the people the consultation was aimed at, consulting for just under eight weeks is wholly inadequate.

    It is unclear why DWP thought it was appropriate to close the consultation after just eight weeks, given that it seems to not envisage actually bringing in any changes until 2025.

    We are very pleased to be working with Ellen on this important case and await DWP’s response to our pre-action letter so we can assess next steps.

    Backlash to the DWP’s plans

    In addition to DPPOs being concerned about the proposals, the Equality and Human Rights Commission and the Work and Pensions Select Committee have criticised the consultation process for being too short, and questioned whether it has grappled meaningfully with the impact that the changes will have on Deaf and disabled people.

    Public Law Project has written a pre-action letter to Mel Stride’s Department on behalf of Clifford, arguing that the consultation process was unlawful and that DWP must not pursue any proposals without further (lawful) consultation.

    A response from the DWP is expected on 14 November 2023.

    Featured image via the DWP – YouTube

    By The Canary

    This post was originally published on Canary.

  • Disabled activist Ellen Clifford has begun a legal challenge against the Department of Work and Pensions (DWP). It’s over the DWP’s failure to consult fairly or lawfully on plans for the Work Capability Assessment (WCA). Its proposed changes could cut income for some chronically ill and disabled people by £390 a month.

    DWP WCA changes

    Proposed changes to the WCA will result in reduced benefits for many disabled people who qualify for Employment Support Allowance and the health element of Universal Credit, by changing how the DWP awards points for conditions such as incontinence, immobility, and social anxiety.

    The DWP also proposes to make it more difficult for individuals who do not score enough points, but who have in any case been assessed as not being able to work or do related activity due to a substantial risk to their health, to qualify for additional benefit payments.

    Clifford’s lawyers at the Public Law Project say the consultation process on the WCA changes may be unfair and unlawful, because:

    • At eight weeks, the time period was too short.
    • Not enough information was provided for people to engage properly with the consultation – it did not make clear that some people could lose up to £390 a month or engage with other negative impacts on disabled people.
    • No reasonable adjustments were made for the fact that the most important consultees are disabled people who may need additional support to respond.
    • The consultation design shows no evidence that the secretary of state gave due regard to his Public Sector Equality Duty.

    ‘Unfair and unlawful’

    Clifford said:

    The DWP’s proposals will take much-needed money out of the pockets of disabled people. The proposals themselves do not stack up, and the way they have gone about consulting on the changes is unfair and unlawful. At the very least, the DWP must not pursue any proposals without proper, lawful consultation.”

    The consultation proposes changes to how the system assesses ‘mobilising’, ‘absence or loss of bowel/bladder control’, ‘coping with social engagements’ and ‘getting about’ activities, by removing them entirely or reducing the points awarded for the descriptors.

    People affected by these conditions may lose some benefits altogether or could be moved into a different benefit category which would require them to carry out mandatory ‘work related’ activities as a condition of receiving these benefits.

    Pushing more chronically ill and disabled people into poverty

    She continued:

    These proposals could harm many disabled people who rely on benefits, and push more disabled people into poverty.

    The consultation took place over less than eight weeks. Deaf and disabled people’s organisations – DPPOs – had no advance warning. There was another consultation process running at the same time, in addition to lots of other competing demands on the time of under-resourced DPPOs, of which DWP was well aware.

    For impairment-related reasons, I found it personally difficult to engage with the proposals within the short consultation period. All the DPPOs I spoke to who were able to respond said eight weeks was too short and didn’t give them the chance to consult properly with their members. A number of DDPOs (including DDPOs in the devolved nations) had to rely on a template response in support of key points made by DPO Forum England.

    This left them unable to provide DWP with the level of detail appropriate for a consultation on proposals with the potential to have such serious adverse impacts on the lives of disabled people. Some DDPOs were totally unaware of the consultation and others simply couldn’t respond at all within the given timeframe..”

    The DWP says that the increase in working from home means disabled people can access the world of work more easily. Research shows that disabled people are less likely to work from home than non-disabled employees, yet DWP made no attempt to engage with or even acknowledge those findings.

    The consultation papers do not make clear that the changes may mean a reduction in the amount of benefits a person receives, and that those impacted after undergoing a new Work Capability Assessment could become subject to mandatory activities in order to receive their benefits, and risk being sanctioned if they cannot comply with the conditions imposed.

    DWP make statements about how appropriate support will be available to help disabled people to get back into work, but there is no real detail on this, and they refer to existing projects like Access to Work (AtW). Difficulties accessing AtW consistent with my own personal experience have long been flagged by DDPOs without adequate remedy.

    ‘Life-altering consequences’

    Aoife O’Reilly, the Public Law Project lawyer acting for Clifford said:

    There are principles of fairness that Government departments must follow when carrying out consultations like this.

    The changes being consulted on will have life-altering consequences for disabled people. When you think about the diverse accessibility needs of the people the consultation was aimed at, consulting for just under eight weeks is wholly inadequate.

    It is unclear why DWP thought it was appropriate to close the consultation after just eight weeks, given that it seems to not envisage actually bringing in any changes until 2025.

    We are very pleased to be working with Ellen on this important case and await DWP’s response to our pre-action letter so we can assess next steps.

    Backlash to the DWP’s plans

    In addition to DPPOs being concerned about the proposals, the Equality and Human Rights Commission and the Work and Pensions Select Committee have criticised the consultation process for being too short, and questioned whether it has grappled meaningfully with the impact that the changes will have on Deaf and disabled people.

    Public Law Project has written a pre-action letter to Mel Stride’s Department on behalf of Clifford, arguing that the consultation process was unlawful and that DWP must not pursue any proposals without further (lawful) consultation.

    A response from the DWP is expected on 14 November 2023.

    Featured image via the DWP – YouTube

    By The Canary

    This post was originally published on Canary.

  • The ongoing Covid Inquiry has been hitting the headlines once again – but this time for some of the wrong reasons. While the media focuses on Dominic Cummings’ use of swear words, the biggest story is that the government deliberately let certain sections of the population die. Not that the state killing off its own citizens in the UK is somehow new – just ask the Department for Work and Pensions (DWP) about it.

    Covid Inquiry revelations

    On Tuesday 31 October, the public inquiry into the coronavirus (Covid-19) pandemic heard evidence from former Downing Street director of communications Lee Cain, and former advisor to Johnson, Cummings. As the Guardian summed up, some of the main takeaways from their evidence were that:

    Cummings used misogynistic language to denigrate the deputy cabinet secretary, Helen MacNamara. But he claimed foul-mouthed messages about his colleague were not misogynistic, saying he was “much ruder about men”.

    Overall, it noted that:

    A toxic culture of government incompetence, backstabbing and misogyny was laid bare

    And the inquiry heard that:

    Johnson’s chaotic indecisiveness delayed lockdown measures

    However, for many people, the main takeaway of the Covid Inquiry on 31 October was, as the Guardian noted, that Johnson:

    had told senior advisers the Covid virus was “just nature’s way of dealing with old people” and he was “no longer buying” the fact the NHS was overwhelmed during the pandemic.

    As a member of campaign group Covid-19 Bereaved Families for Justice UK summed up on X, Johnson:

    clearly didn’t see people like my mum as human beings, and thousands others died unnecessarily after the same mistakes were repeated because of Johnson’s callous and brutal attitude.

    The notion that Johnson thought older people were expendable to protect the economy – that is, that they can die in the name of protecting the rich and younger people – is, as the relative said, “callous and brutal”. However, there is another word for it: ‘democide’.

    Democide

    As poet Michael Rosen tweeted:

    ‘Democide’, as Rosen probably meant to type, is:

    a term coined by political scientist R. J. Rummel for “the murder of any person or people by a government, including genocide, politicide, and mass murder”… Democides are not the elimination of entire cultural groups, but rather groups within the country that the government feels they need to be eradicated for political reasons and future threats.

    So Rosen is arguing that Johnson and his government were willing to kill members of certain groups of people for political reasons – based on the evidence from the Covid Inquiry.

    ‘Let the old people get it’

    As the Financial Times (FT) reported, the Covid Inquiry heard that:

    Cain said Johnson did not believe Covid was a “big deal” and thought “his main danger [was] talking [the] economy into a slump”.

    The article went on to state that:

    Sir Patrick Vallance, the government’s former chief scientific adviser, wrote that Johnson appeared “obsessed with older people accepting their fate” and considered the virus to be “just Nature’s way of dealing with old people”.

    In December 2020, weeks before England entered a third national lockdown, Vallance wrote: “Chief whip [Mark Spencer] says ‘I think we should let the old people get it and protect others’. PM says ‘a lot of my backbenchers think that and I must say I agree with them’.”

    Further to this, the health secretary during the early stages of the pandemic, Matt Hancock, allowed hospitals to discharge people into care homes without testing them for coronavirus. Over 40,000 people in care homes’ deaths involved Covid. This is a clear example of the state actively enabling the deaths of older people for political reasons – that is, because it believed the NHS would not cope with the pandemic. The High Court eventually ruled that Hancock’s actions were unlawful.

    Furthermore, campaign groups have questioned the legality of the NHS putting blanket Do Not Resuscitate (DNR) notices on clinically vulnerable people – like chronically ill and learning disabled people. Around 500 of these DNRs breached people’s human rights. Again, the state – via the NHS – was actively encouraging the deaths vulnerable groups of people for political reasons.

    Democide during the pandemic, and at the DWP

    So, Rosen’s reference to democide is apt. He’s not the first person to posit this, though. As the Canary reported in 2022, the People’s Covid Inquiry – led by barrister Mike Mansfield QC – noted that:

    The question is raised as to whether this amounts to democide (‘the killing of members of a country’s civilian population, as a result of its government’s policy, including by direct action, indifference, and neglect’), ‘social murder’, gross negligence manslaughter, or misconduct in a public office?

    However, the idea that – as far as the state is concerned – certain groups of people can die for political reasons is hardly new or shocking.

    Another recent example of democide by the UK government can be found in the policies of the DWP since 2010. As the Canary wrote in 2018:

    Disabled people are starving, homeless, penniless, terminally ill, dying and killing themselves. After three years of one political party’s rule, you could put it down to policy errors; five years could just about be excused by rhetoric like ‘we’re still learning lessons’. But after eight years of misery, poverty death and effective democide  – only one conclusion can be drawn.

    The Conservative government and the DWP are allowing sick and disabled people to die.

    Democide at the DWP: a systemic problem for the state

    For example, 42-year-old mother Jodey Whiting took her own life after the DWP stopped her social security. You can read more about her here. Whiting was just one of tens of thousands of people who died in the previous decade on the DWP’s watch. In 2018 alone at least 750 people took their own lives while claiming benefits from the DWP. However, it’s the figures for people who died after the DWP said they were fit for work which are most pertinent, here.

    As the Canary previously reported, around 90 people a month – 2,380 people overall – died between December 2011 and February 2014 after the DWP told them they were fit for work. This decision meant the DWP would have stopped most, if not all, of their benefits before their deaths.

    Given these figures, it would have been logical for the DWP to have halted the fit-for-work process. Instead, it did very little to change things – and people kept dying. Between 1 March 2014 and 28 February 2017, 1,560 people died within six months of the DWP telling them they were fit for work.

    As Labour MP Debbie Abrahams said in parliament in 2020:

    The death of any person as a result of a government policy is nothing more than a scandal. And it’s clear from the cases that I talked about… this is just the tip of the iceberg. We don’t know what’s going on. For too long the [DWP] has failed to address the effects of its policies. It must now act. Enough is enough.

    Like Johnson and the government’s decisions during the pandemic, the DWP has been making policy decisions for political reasons that it knows will kill people – that is, democide.

    So, while the revelations from the Covid Inquiry aren’t new, they do point to a systemic culture in successive governments which holds that some people’s lives are more valuable than others. Whether it be older people or disabled people, the state believes that some people are expendable for political purposes. That’s the biggest scandal of the Covid Inquiry – and the DWP right along with it.

    Featured image via PoliticsJOE – YouTube

    By Steve Topple

    This post was originally published on Canary.

  • On Monday 30 October, chronically ill and disabled people protested outside the Department for Work and Pensions (DWP) over the department’s planned changes to the Work Capability Assessment (WCA). The demo served as a stark reminder of how chronically ill and disabled people have had to fight the DWP for years – and, clearly, how they’re still going to have to.

    The DWP’s latest changes to the WCA

    As the Canary previously reported, the DWP is planning to change the WCA. Specifically, the following factors – currently considered in the assessment – are being removed:

    • People’s mobility.
    • Bladder or bowel incontinence.
    • The inability to cope in social situations.
    • People’s ability to leave their homes.
    • Work being a risk to claimants or others – a clause which means that an individual is “treated as having limited capability for work and work related activity”.

    That is, the DWP thinks anyone who would currently be exempt due to those descriptors should instead have to work from home. Reading between the lines, the DWP is trying to reduce the benefits bill by forcing more chronically ill and disabled people into work. As the charity Disability Rights told Disability News Service (DNS):

    The government’s proposed changes to the work capability assessment are less to do with helping disabled people into work than a cynical attempt to impose conditionality and to reduce benefit payments.

    In reality, these changes could be terrible for the people affected. They could mean that more people would lose the health-related elements of benefits like Universal Credit. In turn, this means the DWP could subject them to sanctions.

    So, chronically ill and disabled people have begun fighting back – firstly, by going directly to the DWP’s head office.

    DPAC: fighting back against the DWP

    On Monday 30 October, Disabled People Against Cuts (DPAC) organised a protest outside the DWP’s Caxton House offices in Central London:

    Members of DPAC protesting outside the DWP's head office

    Some people’s placards summed up the issues well:

    a placard that reads 'death, worry, persecution, oppose tightening of the WCA' to represent the DWP

    Other groups were out supporting DPAC in person – including branches of Unite the Union’s community wing, and campaign group WinVisible:

    Campaign group WinVisible holding a banner at the DPAC DWP protest which reads 'winvisible women with visible and invisible disabilities'

    Prominent DPAC and disability rights activist Paula Peters lead the protest. She has been one of the most visible faces in the ongoing fight against successive governments and the DWP. Online, campaign group the Chronic Collaboration also got involved:

    However, one of the most pertinent statements came from John McArdle, a campaigner with Scottish disability rights group Black Triangle. He told the protest that campaign groups like his and DPAC had been taking direct action for “13 years, and things are still getting worse”.

    Protesters then blocked the entrance into the road the DWP offices are located on:

    members of dpac and other groups blocking a road as part of their WCA protest

    DPAC used the chant “no more deaths from benefit cuts” – a slogan the group has used for years:

    Cops, surprisingly, did nothing –  but one driver was aggressive towards DPAC members:

    Overall, DPAC’s WCA protest marked a return to the activism the group has become well-known for, after the coronavirus (Covid-19) pandemic stopped a lot of the group’s activity. However, the demo was also a moment for reflection, too.

    A lost decade

    Campaigners formed both DPAC and Black Triangle in the wake of the 2010 election of the coalition government. This came at a time where the Tories and Lib Dems were pushing harsh reforms to the social security system. Both groups were a response to this – and both have been campaigning ever since. During this time, some members of DPAC have passed away – like co-founder Debbie Jolly:

    DPAC co-founder Debbie Jolly

    The Canary has been covering DPAC’s actions since 2016, when the group and its supporters blocked Westminster Bridge in a high-profile piece of direct action. As we wrote at the time:

    For disabled people, this is one of the most worrying times in decades. With support being cut, relentless attacks from the government, and hate crime rapidly rising, it’s little wonder that they feel they need to act. And in the 21st century, the fact that they still have to fight for their rights in such a public way should be a concern to us all.

    Seven years later, the DWP’s persecution of chronically ill and disabled people has barely changed – as McArdle alluded to at the WCA demo. This is despite countless protests, political pressure, and even the UN getting involved. The international body found in a 2016 investigation that successive governments and the DWP had committed “grave” and “systematic” violations of disabled people’s human rights.

    Nothing changes, and disabled people have no choice but to fight

    The demo felt like an eerie moment of déjà vu: hearing the same chants and seeing disabled people blocking roads felt like we’d been here before. DPAC, of course, very much has been here before. The fact that the group is once again having to protest over threats to disabled people – which is ultimately what the issue with the DWP’s WCA changes is – is a damning indictment of the department.

    Moreover, though, it’s a damning indictment of society – there was little support for DPAC’s protest outside of the chronically ill and disabled communities.

    In 2016, opposing the DWP cutting disabled people’s benefits was ‘all the rage’ among some sections of the political and media class, and non-disabled activists. Many people jumped on the bandwagon, lending their supposed solidarity. However, that support has clearly waned, and non-disabled activists, politicians, and journalists have moved on to the next issue they think will further their own aims or careers.

    For chronically ill and disabled people, there is no moving on. This is their lives – and it was frustrating to see so little solidarity from non-disabled people. However, DPAC and other groups will continue to fight the DWP regardless of whether non-disabled people stand with them or not – not because they want to, but because they have no choice. 

    Featured image and additional images via the Canary and DPAC

    By Steve Topple

    This post was originally published on Canary.

  • The Department for Work and Pensions (DWP) is facing a backlash over its plans to change the Work Capability Assessment (WCA). The uproar over its changes – which will force many chronically ill and disabled people to work from home – is such that people will be protesting outside the department’s main office on Monday 30 October. The campaign group behind the protest has branded the DWP and its plans “despicable”.

    The DWP’s latest changes to the WCA

    As the Canary previously reported, the DWP is planning to change the WCA. Specifically, it thinks that the following factors – currently considered in the assessment – are no longer barriers to work:

    • Factoring in people’s mobility.
    • Bladder or bowel incontinence.
    • The inability to cope in social situations.
    • People’s ability to leave their homes.
    • Work being a risk to claimants or others – a clause which means that an individual is “treated as having limited capability for work and work related activity “

    That is, the DWP thinks anyone who would currently be exempt due to those descriptors should instead have to work from home. Reading between the lines, the DWP is trying to reduce the benefits bill by forcing more chronically ill and disabled people into work. As the charity Disability Rights told Disability News Service (DNS):

    The government’s proposed changes to the work capability assessment are less to do with helping disabled people into work than a cynical attempt to impose conditionality and to reduce benefit payments.

    In reality, these changes could be terrible for people affected. They could mean that more people would lose the health-related elements of benefits like Universal Credit. In turn, this could mean the DWP could subject them to sanctions.

    However, chronically ill and disabled people are not taking the DWP’s actions lying down.

    DPAC: fighting back

    Campaign group Disabled People Against Cuts (DPAC) has organised a protest outside the DWP’s Caxton House office in Westminster. On 30 October at 12pm, the group and its allies will gather. This is the last day for the DWP’s public consultation on proposed WCA changes. You can read about the consultation, and find out how to submit evidence to it, here.

    DPAC will be letting the DWP know how dangerous its plans are. The group said in a statement:

    These proposals threaten to remove essential income from Deaf and disabled people and to subject many more of us to distressing and punitive work search activities and benefit sanctions.

    Their argument is that Deaf and disabled people can work from home now. They want to remove assessment points for social anxiety, communication difficulties, mobility issues and bladder/bowel incontinence.

    We know that working from home does not overcome these barriers.

    Research has shown that disabled people benefit less from home working than non-disabled people, because we are less likely to be in the kind of jobs that can be done from home.

    Of course, the DWP’s plans for the WCA are part of a wider but equally toxic plan to further target chronically ill and disabled people reliant on social security.

    ‘Despicable’ plans from the DWP

    As the Canary has been documenting, the current Conservative government appears hell-bent on further persecuting chronically ill and disabled people. It is currently:

    • Planning on scrapping the WCA altogether. This will mean Personal Independence Payment (PIP) health assessments will be used for all benefits. The change could see the DWP strip over 600,000 chronically ill and disabled people of some benefits.
    • Looking at not increasing benefits next April in line with inflation – even though previous increases have not kept pace with rising prices.
    • Planning on getting chronically ill and disabled people’s GPs to refer them to “employment support” if they fit certain criteria.

    Overall, DPAC said of the planned changes to, and potential scrapping of, the WCA:

    These plans will be a disaster for anyone who faces barriers to paid work. They will unquestionably lead to a considerable increase in avoidable harm and more benefit deaths. And we cannot trust Labour not to keep any changes to tighten the WCA if elected.

    Please support the protest however you can and let people know about the consultation and the government’s despicable plans.

    So, anyone affected by the WCA, plus anyone who cares about how the DWP treats chronically ill and disabled people, should get themselves to Caxton House at 12pm on 30 October. DPAC will be making some noise – and the more people there to support it, the better. Those who cannot physically attend can get involved online using #NoMoreBenefitDeaths. The DWP cannot be allowed to get away with this.

    Featured image via the Canary and Wikimedia

    By Steve Topple

    This post was originally published on Canary.

  • The Department for Work and Pensions (DWP) is running a consultation on changes to the Work Capability Assessment (WCA). Its plans have already provoked uproar among chronically ill and disabled people. So, the more people that tell the DWP what they think of its planned WCA changes the better – but there’s only a matter of days left to submit your views to the consultation.

    DWP: controversial changes to the WCA

    As the Canary previously reported, the DWP is planning to change the WCA. Specifically, it’s planning on taking out or changing the following features:

    • Factoring in people’s mobility.
    • Bladder or bowel incontinence.
    • The inability to cope in social situations.
    • People’s ability to leave their homes.
    • Work being a risk to claimants or others – a clause which means that an individual is “treated as having limited capability for work and work related activity “

    That is, the DWP thinks anyone who would currently be exempt due to those descriptors should instead have to work from home. The department has been quite clear on its reasoning, too. It says it wants to remove these aspects:

    so that assessments reflect greater flexibility and availability of reasonable adjustments in work, particularly home working.

    Reading between the lines, the DWP is trying to reduce the benefits bill by forcing more chronically ill and disabled people into work. As the charity Disability Rights told Disability News Service (DNS):

    The government’s proposed changes to the work capability assessment are less to do with helping disabled people into work than a cynical attempt to impose conditionality and to reduce benefit payments.

    In reality, these changes could be terrible for people affected. They could mean that more people would lose the health-related elements of benefits like Universal Credit. In turn, this could mean the DWP could subject them to sanctions.

    The DWP is currently running a consultation on the changes. However, time is running out for people to take part in it.

    The consultation is closing

    The DWP tweeted on Monday 23 October that:

    The full details of the consultation can be found here.

    People have criticised the DWP for its planned changes. For example, welfare rights adviser Ayaz Manji said on X that:

    I don’t think it’s possible to design a more dangerous reform to the benefits system.

    The clients I work with who meet this criteria are people who are facing real harm. Often with a history of suicidal thoughts and attempts, and complex mental health problems. This would target a benefit cut towards people who the DWP knows are in extremely precarious situations…

    The consequences of this are entirely predictable. Really hope that everyone invested in us having a safe and fit-for-purpose social security system can mobilise around this.

    We must stop these ‘horrendously dangerous’ plans

    Ellen Clifford, from campaign group Disabled People Against Cuts (DPAC), told DNS that the DWP is:

    effectively getting rid of out-of-work benefits for disabled people and denying the realities and prevalence of disability to do it, at the same time ramping up sanctions which are proven to discriminate against disabled job-seekers.

    It is horrendously dangerous.

    So, as many people as possible should complete the DWP’s consultation before the 30 October deadline. These regressive, punitive, and dangerous changes must be stopped in their tracks.

    Moreover, people need to apply pressure to Labour to make sure it doesn’t bring these sweeping and horrific reforms to the WCA if it’s elected. Currently, its stance on social security is weak, at best – so there’s no guarantee the party would be any better than the Tories are.

    You can write to your MP here to tell them to urge them not to implement the DWP’s changes.

    Featured image via the DWP – YouTube

    By Steve Topple

    This post was originally published on Canary.

  • A Tory-run Norfolk council has forced a disabled woman living with multiple sclerosis (MS) into a care home against her will. Now, her daughter is campaigning for her to be released and let home. However, they need your help with a ‘Twitter storm’ to try and make the council listen. 

    Living with MS, but forced into a care home

    Disabled People Against Cuts (DPAC) is supporting Linda, whose mum Christine lives with MS. Tory-run Norfolk County Council and its adult social care services forced Christine into a care home – against her will. So, Linda, and her daughter Amelia (pictured) is campaigning to get her mum home. There’s a X (formerly Twitter) storm on Friday 20 October from 7:30-9pm.

    DPAC put a statement from Christine on its website. The Canary is reprinting it in full below:

    My Mum, Christine Lee, was diagnosed with Multiple Sclerosis 25 years ago and has been a full time wheelchair user for several years. She was forced into residential care by Norfolk County Council (NCC) over a year ago following a stay in hospital due to a medication issue. Her care needs had not changed.

    Before this she had been living happily in her flat for which she had (and still has) an assured tenancy. Her flat has been fully adapted for her needs (hoists, wet room etc.) and she has lived there for over a decade. Care is provided by on site care provider Norse Care who are owned by NCC. They provide care 24/7and it is claimed they meet low, medium and high care needs.

    She was told she would only be in the residential home for a maximum of 28 days for assessment. NCC put her in a care home owned by Norse which was miles from her friends, sister and town she had lived all her life. She was completely isolated and not taken out once, her independence completely destroyed.

    The reality is that because my Mum needs more than 13 hours care per week NCC have forced her into residential and have refused care in her home. Mum needs basic personal care only and has full capacity.

    In August Mum was evicted from the Norse care home because I spoke out. She is now in another care home despite telling many NCC staff constantly over the last year that she wants to go home.

    The last year has been horrific. Getting any information has taken months and the dishonesty has been staggering.

    Mum has not been listened to in any way.

    ‘Bullied and distressed’

    Linda continued:

    Other issues are:

    1. Waited 11 months for NCC OT [occupational therapy] assessment. OT refused to visit Mum’s flat to review equipment.
    2. SW ignored Mum’s requests and signed authority to act form for advocacy to be present at all meetings. She visited Mum when on her own and was dishonest and manipulative.
    3. Mum not involved with Care Plan.
    4. Mum had no idea what the SW was taking to panel and when. We were told after the event that she had taken options of staying at the residential in which Mum was isolated or returning home with an over inflated care package which was not as per her assessment (the cost would have been £3500 per week!). Residential was chosen.
    5. The new care home is cheaper than the one they owned but they now want top ups. This was not mentioned before Mum moved. NCC claim they didn’t know costs before the moving date. I have emails from the care home sent to NCC that they did. Mum could face another eviction.
    6. NCC have spent 5 months avoiding and refusing a subject access request.
    7. They have agreed an independent SW, but he is an ex-employee of NCC and is again ignoring Mum’s requests for advocacy.
    8. NCC management have refused to meet with Mum and family.

    There have been many more incidents when we have felt totally bullied and distressed. They are relentless.

    Mum just wants to go home and feels she shouldn’t be in a residential home just because she has a disability. She misses her independence, home, friends and sister.

    Support the Twitter storm

    Linda concluded:

    The issue is being covered by the BBC on Friday 20th October. Doing all of this is definitely outside my comfort zone, but I know it supports Mum and all those who have been treated so unfairly.

    Please can I ask for your support with a Twitter storm to @NorfolkCC and @NorfolkTories between 7.30-9pm on Friday 20th October.

    Hashtag tweets of:

    #Care4Christine

    #ShameonNCC

    #FreeChristineLee

    If you can get involved, please do. You can read more on Christine’s story here.

    Featured image via Christine Lee’s family

    By Steve Topple

    This post was originally published on Canary.

  • In recent weeks, the Labour Party has been revealing some of its plans for the Department for Work and Pensions (DWP) – or rather, its revealed what little plans it actually has. This particularly applies to chronically ill and disabled people, as Labour is already showing that they’re low on its list of priorities. This isn’t a surprise though, as the party has put right-winger Liz Kendall in charge of the DWP brief.

    Labour and the UNCRPD: not happening

    First, Labour will not be implementing the UN Convention on the Rights of Persons with Disabilities (UNCRPD) into domestic law. The UK has ratified the UNCRPD – meaning it agrees with its covenants and has said it will adhere to them. However, as the Canary has documented, successive governments haven’t been sticking to the UNCRPD at all.

    In 2016, the committee in charge of the UNCRPD found that Conservative-led administrations had committed “grave” and “systematic” violations of chronically ill and disabled people’s human rights. The chair of the committee went as far as to say governments had created a “human catastrophe“. Currently, the UN committee responsible for the CRPD is investigating the UK again.

    So, you might think it would be a priority for Labour to put the entire UNCRPD into domestic legislation. However, the party’s shadow minister for disabled people – Vicky Foxcroft – has said it won’t be.

    Labour’s policy document on this states:

    We will honour our commitments to the United Nations’ Convention for the Rights of Disabled People and ensure its principles are reflected across government to create policies which remove barriers to equality and focus on disabled people’s representation at all levels of government.

    That’s not the same as making it law – which Foxcroft has admitted. She told Disability News Service (DNS) that ““the wording in [the document] is the wording at the moment”. Foxcroft added:

    We’ve still got time until the next [election].

    I think it’s one of those where in government you have to hold us to account in terms of whether we are actually committed to it.

    This attitude shows that Labour has little concern for chronically ill and disabled people’s rights in terms of the UNCRPD. However, the UNCRPD isn’t the only area where the party has let down chronically ill and disabled people down.

    Vacuous word soup – and not a lot else

    As DNS also reported, the DWP is planning to change the Work Capability Assessment (WCA). Specifically, the DWP is planning on taking out the following features:

    • Factoring in people’s mobility.
    • Bladder or bowel incontinence.
    • The inability to cope in social situations.
    • People’s ability to leave their homes.

    That is – the DWP thinks anyone who those descriptors apply to should have to work from home. Disabled People’s Organisations (DPOs) have already condemned the plans as “dangerous”.

    So, Labour has said it will not be carrying out these changes if they’re elected. However, that’s about as good as it gets. As DNS also reported, new shadow work and pensions secretary Liz Kendall’s:

    speech to the annual conference contained almost no social security policy detail, with vague pledges to “transform employment support so it’s tailored to individual and local needs”, make “sweeping changes to jobcentres”, “reform universal credit” and “champion equality for disabled people”.

    Foxcroft defended the lack of policy detail in her new boss’s speech, saying she “didn’t have very long to speak”.

    Kendall’s vacuous word-soup of buzz phrases isn’t surprising. Historically, she’s made it clear she is on the right when it comes to social security. As the Big Issue reported, when Kendall ran for the Labour leadership in 2015:

    She was the only candidate to back acting leader Harriet Harman’s decision not to oppose welfare cuts made by the Conservative government.

    She said she would not oppose the bill “unless we show how we can pay for the alternative” and supported a benefit cap set by the government. This was seven years ago, but it remains an insight into Kendall’s politics and has roused worry among some campaigners.

    Throughout 2022, Kendall was absent for a number of votes on welfare benefits – but in previous years she has voted for increasing benefits and against cuts alongside her Labour colleagues.

    Kendall’s predecessor, Jonathan Ashworth, was no better – tabling policies which, as the Canary previously wrote, were:

    peddling the right-wing idea that there are chronically ill, sick and disabled people who should be working but aren’t – ‘benefit scroungers’, but without explicitly saying it.

    However, even if Labour’s policies for chronically ill and disabled people weren’t lacking – it may not make a difference, anyway.

    Can Labour really change the DWP, anyway?

    Much of the DWP’s decision making is extra-governmental. That is, civil servants, not politicians, drive and implement policy.

    For example, the department’s current reforms to the WCA – scrapping it, and using Personal Independence Payment assessments for everything – are not a current government policy. The DWP originally announced it when Amber Rudd was work and pensions secretary in 2019. There have been three different governments, and three work and pensions secretaries, since then. Yet, the DWP is still implementing the policy.

    It’s a similar story with Universal Credit. It’s a system the Tories originally created when they weren’t even in government. However, the DWP has pushed it ever since, regardless of who has been in power. Part of the problem has been work and pensions secretaries’ unwillingness to force reform at the DWP, challenge bad policy making – or introduce good ones in the first place.

    So, Labour’s stance on chronically ill and disabled people, while vague at best, may not matter that much anyway. Without significant reform to the DWP as an institution, little is likely to change.

    Featured image via Good Morning Britain – YouTube

    By Steve Topple

    This post was originally published on Canary.

  • Some media outlets are reporting that the Department for Work and Pensions (DWP) has said it is reviewing whether or not to give claimants more cost of living payments. It comes as the next batch of money is due to drop into some people’s banks from 31 October. However, the reports should not be taken at face value – as the government is in the midst of a clampdown on benefit claimants.

    When is the next cost of living payment?

    The DWP has been paying some claimants cost of living payments. Overall, it’s giving people £900, split into three payments. It paid the first one in April. People will start getting the second payment of £300 from 31 October. Then, a third payment of £300 will be made in spring 2024. However, the DWP is not giving them to everyone.

    Many Universal Credit claimants will get the money. However, if you only claim one of the following benefits, you will not get the cost of living payment:

    In April, as the Canary previously calculated, this meant around 1.6 million people on benefits were not entitled to the first cost of living payment. This included many chronically ill and disabled people.

    Now, some media is reporting that the DWP is considering more cost of living payments.

    Media reports another round of DWP support might be coming

    Birmingham Live reported on Monday 9 October:

    DWP looking at more cost of living payments as November announcement expected

    The Government review will decide whether extra support is needed as householders face a winter of rising costs

    It also said:

    More cost of living payments could be announced to help hard-pressed households if a Government review decides there is a desperate need for additional support. The Department for Work and Pensions says it is assessing its current package of measures to see whether further cash sums should be rolled out.

    netmums ran a similar story on Thursday 12 October. It noted that:

    Guy Opperman, Minister for Employment at the DWP, said we should expect an announcement on any future cost of living payments in the Autumn Statement which is being held on 22 November, 2023.

    Mr Opperman said: ‘Obviously there is an Autumn Statement in November which would be the clear time for decisions to be telegraphed, if not decisions made.’

    However, both these stories should be approached with caution.

    A large pinch of salt needed

    Birmingham Live and netmums are basing the potential for more cost of living payments on a Westminster Hall parliamentary debate from 4 September. This is where MPs discuss an issue away from the House of Commons. During this debate, minister for disabled people Tom Pursglove said:

    There is ongoing work to review the cost of living payments that the Government have made available in the current climate. I anticipate that the results will come forward over the autumn and inform future decisions that we make. We continue to have conversations with the Treasury about the support that we provide.

    This in no way means the government will roll out further cost of living payments. In fact, the DWP is already considering cutting people’s benefits in real terms in 2024. Plus, as Disability News Service (DNS) reported, the Conservative Party conference was a platform for ministers to:

    ramp up rhetoric that blames disabled people on out-of-work benefits for the country’s economic problems

    Given the current government has a clear agenda of targeting benefit claimants, the idea that it will given them another round of cost of living payments is fanciful at best. So, take any news reports of this with a larger-than-average pinch of salt, as it’s unlikely any new support for people already impoverished will be arriving soon.

    Feature image via SteveAllenPhoto999 – Envato Elements, UK government – Wikimedia, and UK government – screengrab

    By Steve Topple

    This post was originally published on Canary.

  • The family of a woman from Sussex living with severe myalgic encephalomyelitis (ME) has said the NHS still hasn’t responded to their pleas for help, weeks after they contacted it. Karen Gordon is bedbound at home with what the family says is “life-threatening dehydration and malnutrition”. Yet despite this, as well as a petition and media attention, the NHS is failing to act to save her.

    Karen Gordon: living with ME since she was 10

    Karen has lived with severe ME for nearly 20 years. It is a chronic systemic neuroimmune disease not dissimilar to Long Covid. You can read more about ME and its symptoms here. Around 25% of people living with the disease are classed as ‘severe’ or ‘very severe’. These people are generally, if not permanently, bedbound; they’re often unable to eat solid food, and sometimes barely able to communicate.

    This is what Karen’s life is like. As a petition her family set up for her notes:

    Karen is totally bed bound and cannot eat or drink.

    The ME causes many symptoms including generalised pain, abdominal pain, headache, nausea and vomiting, fatigue, and hypersensitivity to sensory stimuli including, light and noise. She has to keep her eyes covered…

    Karen has had ME since she was 10 years old. She has been tube fed for 19 years mostly at home. In the last two years her ME health has become worse, causing more severe nausea and vomiting and severe abdominal pain leading to more feeding and nutritional difficulties.

    Medical professionals generally think there is no known cure for ME. Around 6% of patients have recovered from the disease – but otherwise, doctors often leave people without adequate support or care – actively making their condition worse. This is what Karen is currently experiencing. However, the NHS has repeatedly failed her.

    The NHS: worsening Karen’s situation

    As the Canary previously reported, Karen has repeatedly had to go into hospital because she cannot eat or drink. However, the Conquest Hospital in St Leonard’s-on-Sea has been making this increasingly impossible for Karen. Due to her ME causing extreme hypersensitivity to noise, she needs a side room when she’s an in-patient. The hospital stopped providing this – but did agree that she could be tube-fed at home.

    However, the Conquest Hospital said it could not do this. Bosses told Karen she would have to travel 100 miles to the St Mark’s hospital in London which could arrange it. Again, her ME would make the journey impossible, so Karen said she couldn’t do that either.

    So, the hospital refused to help Karen and discharged her. Her family then started a petition, begging people to support Karen and them. On 14 September, her family noted that:

    Two tests in the last month have shown that Karen is dehydrated. But she has not even been given a few days of I/V fluid at home to help her during this time by the Urgent Community Response / Virtual Ward teams.

    They believe she is:

    suffering from life threatening dehydration and malnutrition. She has lost a lot of weight. She is getting thinner and thinner. Karen is scared that she is going to die from dehydration and malnutrition. Karen does not want to die.

    Karen needs the East Sussex Healthcare NHS Trust to provide I/V feeding (TPN) and I/V fluid at home without delay.

    In response to a Canary article on Karen’s plight, East Sussex Healthcare NHS Trust which runs the Conquest Hospital said on 20 September it will:

    continue to work to provide care that will deliver the best outcome for our patient.

    However, we now know this hasn’t been the case.

    Not an isolated case for people with ME

    Karen’s family updated her petition on 9 October. They said:

    It has been two weeks since we contacted Joe Chadwick-Bell, CEO of East Sussex Healthcare NHS Trust, about Karen’s life-threatening malnutrition and dehydration and about the hospitals not meeting the needs that Karen has because of her very severe M.E. We still have not had a response to our concerns and our request for urgent action.

    Karen is continuing to struggle and is still getting thinner and thinner.

    To sum up, the Conquest Hospital is doing nothing. This is despite the petition getting nearly 9,000 signatures and media coverage of Karen’s dire situation.

    This lack of action and care from the NHS is not an isolated case in terms of ME. The Canary has documented several women who it has treated in a similar way. Moreover, at least anecdotally, people living with ME will tell you that neglect and failure is par for the course when dealing with the NHS.

    Karen’s situation in Sussex is extremely concerning – and she needs immediate support to get the NHS to listen. Long term, however, a sea change is needed so the health service never leaves people with ME in these kinds of situations again. When that change will happen, and where it will come from, remains to be seen.

    Featured image via Karen Gordon’s family

    By Steve Topple

    This post was originally published on Canary.

  • For 58 years, Medicare and Medicaid have provided life-saving and life-sustaining care for millions of Americans, but they are rapidly being weakened by politicians who insist on inviting corporations to oversee their implementation. Health insurance companies are creeping into Medicare and Medicaid via so-called “managed care.” Often proposed as a cost-saving measure, managed care is when…

    Source

    This post was originally published on Latest – Truthout.

  • Oxford University Hospitals NHS Foundation Trust has issued an apology – of sorts – to charity the ME Association. It’s over an offensive job advert that angered people living with the chronic neuroimmune disease myalgic encephalomyelitis (ME). However, Oxford NHS’s ‘apology’ is barely that – and has actually done little more than re-gaslight a whole group of chronically ill disabled people.

    Oxford NHS: one advert igniting a whole community

    The Canary has been documenting the controversy over Oxford NHS’s job advert. It’s hiring a clinical psychologist. The role will be working in the ME service, and the renal and transplant medicine service. However, Oxford NHS said in the advert (since altered) that the role would involved working with patients who have:

    difficulties in understanding (such as cognitive deficits, or unconscious denial of psychological conflicts), or overcoming communication difficulties with patient who are hostile, antagonistic, highly anxious or psychotic.

    It would also involve dealing with:

    verbal abuse and risk of physical aggression (for example from people with behavioural problems or enduring mental illness).

    Of course, it goes without saying that people with ME aren’t ‘hostile’, ‘antagonistic’, ‘verbally abusive’, or ‘physically aggressive’ – generally because they live with an energy-limiting chronic illness that barely lets them do things like wash up or go out for a coffee, let alone kick off at psychologists.

    Enter the ME Association

    In short, as I previously wrote, Oxford NHS’s overall thinking implied:

    that ME patients are ill because, at least in part, their illness is psychosomatic (“unconscious denial of psychological conflicts”) – and this needs to be clinically psychologised out of them.

    So, the ME Association got involved. The charity wrote to Oxford NHS asking it to change the advert to “remove the offensive language”. Consultant clinical neuropsychologist at Oxford Dr Simon Prangnell replied to the ME Association. He said that the wording that caused offense was not about people with ME. It was there in case the post holder had to respond to “emergency situations not necessarily within their usual service”.

    This still wasn’t good enough for the ME Association – and rightly so. It then wrote to the boss of the NHS trust. Now, Oxford NHS has replied – saying ‘sorry’, noting that it has changed the advert and “revised the wording”. And the new wording must be good, because the ME Association said that it will be writing back to “thank them for taking this action”. Surely, Oxford NHS must have got it right this time? Yes?

    No, of course it bloody well didn’t.

    Rewording, but still saying, the same shit

    The Oxford NHS ad for a clinical psychologist still states, in relation to ME patients, that the post holder will have to deal with people who are:

    highly emotionally charged (such as eliciting/discussing experiences of trauma or childhood abuse), and which may require managing difficulties in understanding (such as cognitive deficits, or unconscious denial of psychological conflicts)

    And that the person will need to be:

    Skilled at communicating with patients who may at times present as hostile or who are highly anxious or psychotic.

    All Oxford NHS has done is put the part about patients being ‘verbally abusive’ or ‘physically aggressive’ in the context of:

    exceptional circumstance (for example, when working with a person experiencing a mental health crisis or responding to an urgent / emergency situation)

    So, people living with ME still:

    • Have unconscious denial of psychological conflicts – implying that ‘the illness is all in people’s heads’.
    • Are “hostile”, “highly anxious”, and/or “psychotic” – implying that ‘the illness…’ etc etc.

    Moreover, they’ve had some “childhood trauma” which is also causing their ME or making it worse. Although they may not remember it (probably because it never bloody happened), it is definitely somewhere at the root of their post-viral illness and the multitude of symptoms this causes. ‘The illness is all in people’s heads AND it’s their parent’s fault’.

    ME: round in circles we go

    How the ME Association thought the appropriate response to this re-gaslighting of the people it’s supposed to represent was to grovel and say ‘thanks’ to Oxford NHS is anyone’s guess – because even the letter from the trust to it was deviously worded and obtuse.

    Oxford NHS said that:

    The Trust did not intend to imply that all people [with ME] experience severe mental health conditions such as psychosis, or that all individuals would present with challenging behaviour.

    In other words, people with ME aren’t ALL psychotic – just some of them are! They don’t ALL have challenging behaviour – just some of them do! Unless I’m missing something, this is the implication of Oxford NHS’s words: the words that the ME Association accepted as a sufficient apology.

    All of this is unsurprising, given – as I previously wrote – Oxford NHS is a hotbed of crank psychiatrists desperately applying their fraudulent, pseudo-scientific ideas to a physical illness.

    So, round in circles we go. After decades of abuse and neglect, an NHS trust repeatedly gaslights patients (while ignoring a wealth of actual science), and a charity (who said patients pay money to, to advocate for them) rolls over and takes it. Not good enough, in any way, shape, or form – given that just this week I reported on another ME patient dying while the NHS neglects her – but not surprising, either.

    Once again it’s marginalised, chronically ill disabled people who have to tolerate this shit – on top of tolerating an illness which leaves many of them more functionally impaired than even cancer or heart disease does. They should not accept this continued abuse from Oxford NHS – and nor should they accept the ME Association’s simpering response, either.

    Featured image via Alex E. Proimos – Wikimedia, resized to 770×403 under licence CC BY 2.0. the NHS – screengrab, and the ME Association – screengrab

    By Steve Topple