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Category: Disability

  • A Labour council is ‘torturing’ a disabled man by threatening to evict him

    A Labour-run council is still trying to evict two brothers, one of whom is disabled, from their family home. It comes after the council wanted them out on Boxing Day 2021. And even after medical professionals and support workers appealed to the council to show leniency, it’s still refusing to back down.

    A traumatic year made worse by a Labour council

    As The Canary previously reported, Sean and Andrew Brogan live in West Lancashire. The home is a council property, managed by Labour-led West Lancashire borough council. Andrew, who lives with Asperger’s syndrome, has always lived there. They currently face the prospect of the council kicking them out – essentially because both their parents died.

    In November 2021, it gave the brothers a “Notice to Quit“, which ran out on Boxing Day last year. This was because the tenancy was in their late mother’s name, not theirs. Legally, the council can do this. As The Canary previously reported, this is because the family’s tenancy was originally a joint one between the brothers’ parents.

    When their father died, their mother inherited it though a process called “succession“. This process of inheriting a tenancy agreement can generally only happen once. So, in theory, Andrew doesn’t have any right to the tenancy. Sean confirmed that the council refused their request for a further tenancy succession.

    Andrew’s situation is exacerbated by the fact he lives with Asperger’s syndrome. In his case, this means it’s vital for his wellbeing to remain in familiar surroundings. Sean wrote that:

    the only suitable place that he can reside in is within the home he has lived in since he was born as it is familiar and safe to him. This has been the family home since 1958.

    So, Boxing Day came and went, and the council didn’t evict the brothers. But now, it appears ready to do so.

    Ignoring Anthony’s reasonable adjustments?

    On 1 March, the council wrote to the brothers. It was after Sean, along with Anthony’s support workers, GP, occupational therapist and others asked the council to reconsider its decision given Anthony’s circumstances. But the council refused to change its decision.

    In a letter seen by The Canary, the council reiterated its succession policy. It also said that the house was too big for the brothers (it’s a three bedroom residence). But crucially, the council said that it was:

    unable to determine that [Anthony’s situation with Asperger’s] is sufficient grounds to consider granting the tenancy.

    It has offered the brothers a two bedroom flat instead.

    West Lancashire council says…

    The Canary asked West Lancashire borough council for comment. A spokesperson told us:

    West Lancashire Borough Council’s Tenancy Services team have been working closely with Mr Brogan and his family to find a solution to his housing situation. We appreciate this has been a very upsetting time for Mr Brogan and our officers have been sensitive to this while exploring the options we have at our disposal.

    A review of the decision that Mr Brogan was not entitled to succeed to his mother’s tenancy has now been carried out, taking into account supporting information the family and support services have provided. We accept there may be circumstances that warrant exceptions to the normal rules – in such circumstances we may consider granting a new tenancy to a person who may not normally be entitled to succeed, as is the case with Mr Brogan.

    After careful consideration of all the facts, including support and adaptation needs, the type and size of the property and demand for family accommodation in the area, it has been decided that unfortunately, we are unable to award the tenancy of this three bedroom house to Mr Brogan.

    ‘Significant impact’ but still evicting them, anyway

    The council spokesperson continued:

    Naturally, we appreciate that the prospect of having to move from the family home where he has lived for many years will have a significant impact on him and we are keen to continue to support him to find suitable alternative accommodation – with this in mind we have already made an offer of the tenancy of a two bedroom flat close to his current home so he can continue to live in the area that is familiar to him.

    We are committed to offering applicants a choice of accommodation and will look into individual circumstances when someone is left in a property following the death of a relative. Unfortunately, the Council may not be able to meet all requests due to the level of demand or availability of accommodation within the Borough.

    “Tortured”

    Sean and his brother are devastated. He told The Canary:

    We’ve felt tortured for months on end, with zero communication from them until now. My brother is crying and won’t talk. I’m not sure what we’ll do now. But I think we’ll end up in court.

    The brothers still have options. So far, the council has not asked a court for an eviction notice, and the brothers can therefore stay in the property. If the council serves them an eviction notice, they have the right to appeal it in front of a judge. A court may be more understanding of Anthony’s clear need to stay in the family home. But of course, this sort of cruel outcome is all the more likely when you have governments, councils and housing associations who gut social housing, slash budgets and denigrate poor and disabled people.

    So for now, the brothers are left in limbo – while the council cruelly sticks to its rules on the issue. 

    Featured image via Evelyn Simak – Geograph and Sean Brogan

    By Steve Topple

    This post was originally published on The Canary.

  • The DWP is effectively cutting people’s benefits in April

    The Department for Work and Pensions (DWP) will be effectively cutting people’s social security from April. It means that for people claiming benefits like Universal Credit, the cost of living crisis will be even more catastrophic.

    Even worse, the DWP is trying to disguise these cuts as an increase in benefit payments.

    DWP: social security going up?

    The DWP said in November 2021 that most social security payments will be going up by 3.1% from April 2022. It comes after previous governments froze rates for four years from April 2016. Since then, the DWP has increased social security rates. But the rises won’t make up for the four-year freeze. This is because of inflation – that is how much the cost of things we buy rises by. And now, the DWP has again ignored the impact of inflation on social security.

    A 3.1% increase will means that parts of Universal Credit will go up. For example:

    • Standard allowances for single people under-25 will rise from £257.33 to £265.31.
    • The same but for joint claimants over-25 will rise from £509.91 to £525.72.

    Most other social security, like Personal Independence Payment (PIP), will also go up by 3.1%.

    Universal Credit

    Some health and disability-related elements of Universal Credit and social security are going up by a bit more. For example:

    • Universal Credit limited capability for work and work-related activity will rise from £341.92 to £354.28 – a 3.6% increase.
    • PIP rates for the standard mobility element will rise from £23.70 to £24.45 – a 3.2% increase.

    A few social security payments are going up by less. For example, for Employment and Support Allowance (ESA) the:

    • Work-Related Activity Group element will rise from £29.70 to £30.60 – a 3% increase.
    • Support Group element will rise from £39.40 to £40.60 – a 3% increase.

    These increases may seem like a good thing. But in reality, they are actually cuts.

    An actual cut to your money

    The problem is inflation. The DWP has based the social security rise on September 2021’s inflation rate. But since then, it’s shot up. Forecasts now say inflation could hit 7% by the spring. So, that would mean the 3.1% social security increase would actually be a cut.

    The Institute for Fiscal Studies (IFS) crunched some numbers on this. It worked out how an inflation rate of 6% would affect the 3.1% social security increase. The IFS found that some 10 million households will lose on average, in real terms, £290 a year. This will come on top of the government’s national insurance hike of 10.4%; a 54% rise in energy bills; stagnating real-terms wages, and more potential increases in petrol prices.

    As the IFS showed in a graph, rising prices will hit the poorest people the hardest:

    A graph showing how inflation affects different social grades of families

    Capping children into poverty

    Meanwhile, the overall benefit cap is staying the same. This is the maximum amount households can claim in social security. The cap hasn’t changed since the DWP lowered it in 2016. The rates since then have been:

    • £20,000 for couples and lone parents outside Greater London (£13,400 for single adults with no children).
    • £23,000 for couples and lone parents in Greater London (£15,410 for single adults with no children).

    The benefit cap was keeping around 150,000 children in poverty as of 2020. Affected households lose an average of £55 a week because of it. And the number of people the cap hits has more than doubled because of the coronavirus (Covid-19) pandemic. Current high inflation, coupled with the DWP’s real-terms social security cut, means the cap will have an even greater negative affect on countless households.

    A cut in all but name

    Overall, the DWP’s social security increase cannot be called anything else but a cut. 2.5 million families were already struggling to pay rent and heat their homes. 15% of households live in food insecurity. 4% of households have used a foodbank. Now, if inflation continues to soar, 2022 could be an even more devastating year for countless families. So, it’s up to us and our communities to support each other as best we can.

    Featured image via Schäferle2 – Pixabay and UK government – Wikimedia 

    By Steve Topple

    This post was originally published on The Canary.

  • Disabled Activist Speaks Out Against Ableism During Pandemic

    Alice Wong says that pandemic policy and discourse reflected how disabled people are often considered disposable.

    San Francisco — In early January, one of the country’s top public health officials went on national television and delivered what she called “really encouraging news” on covid-19: A recent study showed that more than three-fourths of fatalities from the omicron variant of the virus occurred among people with several other medical conditions.

    “These are people who were unwell to begin with,” said Dr. Rochelle Walensky, director of the Centers for Disease Control and Prevention.

    Walensky’s remarks infuriated Americans with disabilities, who say the pandemic has highlighted how the medical establishment — and society at large — treats their lives as expendable. Among those leading the protest was San Franciscan Alice Wong, an activist who took to Twitter to denounce Walensky’s comments as “ableism.” Walensky later apologized.

    Wong, 47, moves and breathes with the aid of a power wheelchair and a ventilator because of a genetic neuromuscular condition. Unable to walk from around age 7, she took refuge in science fiction and its stories of mutants and misunderstood minorities.

    Her awakening as an activist happened in 1993, when she was in college in Indiana, where she grew up. Indiana’s Medicaid program had paid for attendants who enabled Wong to live independently for the first time, but state cuts forced her to switch schools and move back in with her parents. Wong relocated to the Bay Area for graduate school, choosing a state that would help her cover the cost of hiring personal care attendants. She has since advocated for better public health benefits for people who are poor, sick, or older or have disabilities.

    The founder of the Disability Visibility Project, which collects oral histories of Americans with disabilities in conjunction with StoryCorps, Wong has spoken and written about how covid and its unparalleled disruption of lives and institutions have underscored challenges that disabled people have always had to live with. She has exhorted others with disabilities to dive into the political fray, rallying them through her podcast, Twitter accounts with tens of thousands of followers, and a nonpartisan online movement called #CriptheVote.

    Wong is nocturnal — she typically starts working at her computer around 9 p.m. On a recent evening, she spoke with KHN via Zoom from her condo in the city’s Mission District, where she lives with her parents, immigrants from Hong Kong, and her pet snail, Augustus. The interview has been edited for length and clarity.

    Kaiser Health News: Why do you often refer to people with disabilities as oracles?

    Alice Wong: Disabled people have always lived on the margins. And people on the margins really notice what’s going on, having to navigate through systems and institutions, not being understood. When the pandemic first hit, the public was up in arms about adjusting to life at home — the isolation, the lack of access. These are things that many disabled and chronically ill people had experienced. Disabled people had been trying forever to advocate for online learning, for accommodations in the workplace. The response was: “Oh, we don’t have the resources,” “It’s just not possible.” But with the majority inconvenienced, it happened. Suddenly people actually had to think about access, flexibility. That is ableism, where you don’t think disabled people exist, you don’t think sick people exist.

    Have you noticed that kind of thinking more since the pandemic began?

    Well, yes, in the way our leaders talk about the risks, the mortality, about people with severe illnesses, as if they’re a write-off. I am so tired of having to assert myself. What kind of world is this where we have to defend our humanity? What is valued in our society? Clearly, someone who can walk and talk and has zero comorbidities. It is an ideology, just like white supremacy. All our systems are centered around it. And so many people are discovering that they’re not believed by their doctors, and this is something that a lot of disabled and sick people have long experienced. We want to believe in this mythology that everybody’s equal. My critique is not a personal attack against Dr. Walensky; it’s about these institutions that historically devalued and excluded people. We’re just trying to say, “Your messaging is incredibly harmful; your decisions are incredibly harmful.”

    Which decisions?

    The overemphasis on vaccinations versus other mitigation methods. That is very harmful because people still don’t realize, yeah, there are people with chronic illnesses who are immunocompromised and have other chronic conditions who cannot get vaccinated. And this back and forth, it’s not strong or consistent about mask mandates. With omicron, there is this huge pressure to reopen schools, to reopen businesses. Why don’t we have free tests and free masks? You’re not reaching the poorest and the most vulnerable who need these things and can’t afford them.

    How has your life changed during the pandemic?

    For the last two years, I have not been outside except to get my vaccinations.

    Because you’re so high-risk?

    Yeah. I have delayed so many things for my own health. For example, physiotherapy. I don’t get lab tests. I’ve not been weighed in over two years, which is a big deal for me because I should be monitoring my weight. These are things I’ve put on hold. I don’t see myself going in to see my doctor any time this year. Everything’s been online — it’s in a holding pattern. How long can I take this? I really don’t know. Things might get better, or they might get worse. So many things disabled people have been saying have been dismissed, and that’s been very disheartening.

    What kinds of things?

    For example, in California, it was almost this time last year when they removed the third tier for covid vaccine priority. I was really looking forward to getting vaccinated. I was thinking for sure that I was part of a high-risk group, that I’d be prioritized. And then the governor announced that he was eliminating the third tier that I was a part of in favor of an age-based system. For young people who are high-risk, they’re screwed. It just made me so angry. These kinds of decisions and values and messages are saying that certain people are disposable. They’re saying I’m disposable. No matter what I produce, what value I bring, it doesn’t matter, because on paper I have all these comorbidities and I take up resources. This is wrong, it’s not equity, and it’s not justice. It took a huge community-based effort last year to get the state to backtrack. We’re saying, “Hey we’re here, we exist, we matter just as much as anyone else.”

    Do you think there’s any way this pandemic has been positive for disabled people?

    I hope so. There’s been a lot of mutual aid efforts, you know, people helping each other. People sharing information. People organizing online. Because we can’t wait for the state. These are our lives on the line. Things were a little more accessible in the last two years, and I say a little because a lot of universities and workplaces are going backward now. They’re doing away with a lot of the hybrid methods that really gave disabled people a chance to flourish.

    You mean they’re undoing things that helped level the playing field?

    Exactly. People who are high-risk have to make very difficult choices now. That’s really unfortunate. I mean, what is the point of this if not to learn, to evolve? To create a new normal. I can’t really see that yet. But I still have some hope.

    This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

    Subscribe to KHN’s free Morning Briefing.

    This post was originally published on Latest – Truthout.

  • As the PM wreaked havoc, so did the DWP

    Boris Johnson’s further descent into chaos has dominated the news. So, you may have missed the fact that the Department for Work and Pensions (DWP) has been up to its usual, nasty tricks. Here’s some of the news you may have missed while the PM wreaked havoc.

    DWP: failure one

    First up, and as the Mirror reported, the DWP finally released a report into social security. It took MPs getting involved for the department to release it, and even then it still took a year. And it’s of little wonder the DWP wanted to bury it. Because the report is damning. It found that the DWP is failing some of the poorest chronically ill and disabled social security claimants. The report said these people:

    experienced difficulty meeting their health related needs and some also struggled to afford essential day-to-day living costs, such as heating and food.

    The report gave an example of one person’s experience. It noted that the claimant lived alone in a housing association flat. He lived with:

    kidney failure, arthritis in his back, legs and arms, depression and bulimia which caused chronic stomach pains… He was in the ESA Support Group and received PIP… His debt repayments meant he could not afford essential day-to-day living needs and used a foodbank.

    Crucially, the claimant and his family seemed unsure or unaware of what support was available or how to claim it. This poor communication from the DWP isn’t new. As The Canary previously reported, hundreds of thousands of people entitled to Universal Credit during the pandemic didn’t claim it. Many of these people thought they weren’t entitled to it. So, this new report shows what we already knew: the DWP is failing countless people.

    DWP: failure two

    Next, and a court recently ruled that the government’s National Disability Strategy was unlawful. Disability News Service (DNS) reported that the strategy, released last year, was “botched”. One disabled people’s organisation (DPO) said it was “a cynical re-packaging of current polices and current budgets”.

    Chronically ill and disabled people and their organisations were supposed to be able to give input into the strategy. But as DNS reported, four disabled people took the DWP to court because they felt this wasn’t the case. And the court agreed, saying the DWP and government:

    had made it “impossible” for disabled people to “shape” the content of the strategy.

    The court ruled that the consultation was unlawful because the thousands of disabled people who took part were not given enough information about the government’s proposed strategy to allow them “intelligent consideration and response”.

    Now, DNS has learned that the court has also refused to let the DWP appeal the decision. But the department can go to the Court of Appeal. So, the future of the strategy hangs in the balance. Because if it loses an appeal to a higher court, the whole strategy will be unlawful. And, as DNS reported, this may mean the DWP has to scrap the strategy and start again.

    Tory ministers: sticking fingers in their ears

    Meanwhile, two DWP ministers dismissed calls for things to change at the department. DNS reported that minister for disabled people Chloe Smith ignored Labour’s call for an inquiry into deaths on the DWP’s watch. As The Canary previously reported, in the last decade nearly 35,000 people died either waiting for the DWP to sort their claims or after it said they were well enough to work or start moving towards work. But Smith, during a parliamentary debate where Labour’s Marsha De Cordova raised the issue, failed to even acknowledge it.

    Additionally, in the House of Lords, several peers tabled an amendment to the Health and Care Bill. Again, as DNS reported:

    The proposed amendment… would mean that no-one in England who entered the social system at or under the age of 40 would ever have to pay for their support.

    In effect, it would place a lifetime zero cap on social care charges for many disabled people

    But as expected, the Tory peer from the DWP dismissed the idea. Peers may try and add the amendment back in when the bill reaches the report stage.

    DWP: business as usual

    Johnson’s behaviour in recent times is hardly surprising. But while the media focussed on this, the DWP carried on making people’s lives worse. Its contempt for claimants knows no bounds – even in the face of the most damning evidence. So, while we focus on Johnson’s wrongdoings, it’s vital we continue scrutinising the state of our social security system.

    Featured image via 5 News  – YouTube and UK government – Wikimedia 

    By Steve Topple

    This post was originally published on The Canary.

  • Opinion: Basic income for people with disabilities would be a step forward for the whole UBI movement

    Real headway is being made in securing a basic income for people with disabilities in Canada – and that’s good for the whole basic income movement.

    By: Roderick Benns

    Original Post: https://basicincomecanada.org/a-basic-income-for-people-with-disabilities-is-a-step-forward-for-the-whole-movement-rabia-khedr/

    Disability Without Poverty’s national director, Rabia Khedr, says real headway is being made in securing a basic income for people with disabilities in Canada – and that’s good for the whole basic income movement.

    “I support all people having a livable income,” Khedr said. As people with disabilities, we believe everyone has the right to have their basic needs met, regardless of their ability to work. We should be supporting society’s members with their basic needs so they’re not struggling.”

    A basic Income is a guarantee that no Canadian will have to live on an income far below the poverty line, as is currently the case for thousands. This is not meant to be a substitute for needed public services, but rather a federal government cash transfer made directly to individuals. It would serve to replace provincial income assistance programs like Ontario Works and serve to augment the incomes of those who work but not enough to stay out of poverty.

    Khedr says basic income though is most clearly on the table for people with disabilities at the moment, given the most recent throne speech committed to the creation of a new Canadian Disability Benefit for people with disabilities.

    The national director says her organization came about specifically as a result of the pandemic, which pushed people with disabilities “further into the margins.”

    This was obvious, she says, in the way the government reacted with benefits once the pandemic took hold.

    “Working age, able-bodied people? No questions asked – they got $2,000 a month. It speaks to our values,” says Khedr.

    “People with disabilities didn’t make the cut because many hadn’t worked consistently enough.”

    A smaller, one-time benefit of $600 came later in the pandemic, almost as an afterthought, she noted.

    However, Khedr feels optimistic about the road ahead for a basic income for people with disabilities, given the consultation process has been well underway and the government finally seems committed.

    “If we make headway with this, we’re setting a precedent for a livable income for all. Something great is definitely going to happen.”

    She points out that about 89 per cent of Canadians in a recent Angus Reid poll supported a livable income for people living with a disability, showing there is great public support.

    At this time, Khedr’s organization is trying to speed up the process, so that instead of three years of consultations – which the federal government proposed — it would get narrowed down more quickly. This could especially happen, she says, if more people with disabilities were involved in the benefit’s design.

    Last year, about 26 op-eds were published in media outlets in support of a basic income for people with disabilities, and after the last election there was an open letter supporting the movement signed by 200 prominent Canadians. Recently, a parliamentary e-petition was circulated by the new federal Green Party MP Mike Morrice, closing with nearly 18,000 signatures.

    Khedr points out that StatsCan reports that 22 per cent of Canadians have a disability of some kind. “That would be progress, to have nearly a quarter of Canadians’ needs looked after” in the form of a livable income.

    “One step forward is a step forward for more.”

    The post Opinion: Basic income for people with disabilities would be a step forward for the whole UBI movement appeared first on Basic Income Today.

    This post was originally published on Basic Income Today.

  • I’m a High-Risk Disabled Professor. Am I Teaching In Person?

    An educational worker takes a child's temperature at the entrance of a school

    My first class for the Spring semester begins in a couple of hours. I still do not know if I’m teaching in person or moving the class online. Governor DeSantis says I’m teaching in person. The university, where I work, says I’m teaching in person.

    “I have tenure. Why the hell am I teaching in person?” I ask my partner.

    “I don’t know,” he says.

    “Do you think I’m going to die?” I ask.

    “Good news: we’re all going to die,” he says, and this makes me laugh in a macabre way. We’re both poets. He teaches at Harvard and flies back in a couple of weeks.

    I walk into my home office and play music. The playlist I want is bizarre, but at least I’m clear on what I want to listen to: Aphex Twin’s “Alberto Basalm,” Tristen’s “Baby Drugs,” Schubert’s “Trio No. 2” and Hole’s “Malibu.”

    I apply makeup and think: What would Courtney Love do? Courtney Love is disabled. What if Courtney Love were a poetry professor about to teach in person?

    She’d cancel, I decide. She would definitely cancel.

    I change my mind. No, she would mask up, walk in the classroom and say, “Well, here we are.”

    ***

    In Fall 2021, I did not deliberate as much about teaching in person. I just did it.

    I had applied for this job as a creative writing professor at Florida State University (FSU) three times. Twice, I had been rejected. When the job ad appeared, yet again, I nearly did not apply.

    “Why give them the chance to reject me again?” I asked my partner.

    “The search committee changes,” he said.

    So I applied a third time. And landed the job.

    I was thrilled. I returned to teach at my alma mater. As an undergraduate, I had appreciated neither the education at FSU nor the 14 practicing writers on faculty. I was just an in-state student who could not afford out-of-state schools.

    ***

    On the road to teach in person, I call my colleague, the novelist Mark Winegardner, and say, “Mark. What are we doing? Talk to me like I’m your high-risk disabled friend. And I’m about to teach in person.”
    “You’re vaxxed, right?” Mark says.

    “I’m vaxxed and boosted and I’d take a fourth hit if they’d give it to me,” I say.

    “I think you’ll be fine. But don’t take my word for it. Do what you think is right,” he says.

    “I just passed a COVID testing site. The line of cars is out of this world,” I say.

    ***

    In the Fall, I felt a sense of camaraderie about teaching in person.

    I’m tenured, I thought. What can I do with my tenure? Okay, I’m not going to sit at home and luxuriate. I’m not going to teach online because I have job security. Not while adjuncts and grad students and staff have to be there, in person, on the job.

    I’m a disability rights activist, so I know how much it means when allies show up. And I know how much it hurts when allies don’t show up.

    But I’m no martyr, no moral authority. I cuss like a sailor. I have been a coward on more occasions than I’ve been a hero.

    In the Fall, this felt like an adventure. Recklessly going into the unknown.

    ***

    But now here we are. Omicron is blowing up. What are the risks?

    ***

    It probably helps if you know that I was born disabled due to Agent Orange. My dad was drafted into Vietnam in the 70s (“what a stupid war,” he has said), and he served as a pharmacist in Long Bình. He sat on a barrel and he dispensed pills.

    That barrel he sat on? It contained Agent Orange. Then again, so did the fields around him. Did I get my disability from the barrel or the fields? Does it matter?

    My parents, reformed hippies, wanted me to have all the information. So even though I was a kid, I learned about the potential for my own death. Each surgery came with a new talk about “the risks.”

    “Do you understand the risks?” my parents would say.

    ***

    Am I teaching in person? What are the risks? Not just for me, but for my students. Where is the uprising of professors? Where is the change.org petition?

    Percy Shelley, of all people, keeps popping into my mind: “Poets are the unacknowledged legislators of the world.”

    If that’s true, then I am the legislator. I am the keeper of attendance.

    I could turn this car around. I could send one email: “We’re going online.” I could disobey my superiors and the State. But I don’t. I go in there, double-masked, and say to my students, “Welcome to class.”

    ***

    To my critics, who wonder, “Why don’t you just get an accommodation?”

    Have you applied for one? Would you risk additional exposure to visit your doctor’s office for his or her signature on the paperwork? Would you risk possible re-traumatization since your university wants your complete medical history from 1981? Would you be fine with all of this even if your university decides to decline your request? Or would you wish that you had never asked?

    If you never ask, then you are never denied.

    If you are never denied, then there is no record.

    If there is no record, you can take your classes online. Wait to be reprimanded. Reply, “I didn’t know what to do. I was afraid of dying.”

    ***

    Though I may feel alone, I am not alone. Mia Mingus has just published “You Are Not Entitled to Our Deaths” on her blog. One part of the essay reads, “We know the state has failed us. We are currently witnessing the pandemic state-sanctioned violence of murder, eugenics, abuse and bone-chilling neglect in the face of mass suffering, illness and death.”

    I do not have answers.

    I am walking into class, again, in 20 minutes. Dramatic Technique.

    Today we will talk about Sarah Kane’s play Crave. Kane was a queer, disabled playwright. Here is one of the lines from her play that I’d really like to believe: “You’re never as powerful as when you know you’re powerless.” Another line? “I have a bad bad feeling about this bad bad feeling.”

    This post was originally published on Latest – Truthout.

  • Watch: A Run For Freedom: Orlando Boquete’s Story

    “I am living on a boat and selling coconuts on Miami Beach,” Orlando Boquete told me in December 2021. Mr. Boquete spent 23 years wrongly convicted, and since being freed and exonerated by DNA evidence in 2006 has been working hard to rebuild his life.

    “Estoy bien, no te preocupes (I am good, don’t worry).”

    In one way or another, Mr. Boquete, who came to the U.S. as a Cuban refugee in 1980 has always been on the move. He calls himself a survivor, and makes friends easily, everywhere he goes. 

    Since we first met at the Innocence Project Network Conference in San Antonio in 2016, we became fast friends and Mr. Boquete and I have kept in touch. Months later, he asked me to get him a last-minute slot in the Brooklyn half marathon, without having trained for it, to commemorate 10 years of his freedom. I was moved to tears to see him, along with fellow exoneree Jeff Deskovic, cross the finish line in Coney Island as he threw boxing jabs and danced around like Muhammad Ali.

    “Life is great because I’m free.”

    In the time that I’ve known him, he’s lived a nomadic life, frequently calling from a new cell phone number, but always with the same message: “Life is great because I’m free.” Even when he calls from the bed where he sleeps in his truck, a temporary motel room, or the gym where he bathes.

    In the summer of 2020, I spent several weeks with Mr. Boquete in Chicago and teamed up with VeryTaste to produce a short film about Mr. Boquete’s extraordinary path to freedom and his life today.

     

    At the time of his trial, he only spoke Spanish, was unable to navigate the complicated legal system, and was let down by his legal team. He was sentenced to 50 years in prison and the day he arrived at the maximum security prison, he had one goal and that was to leave.

     

    Mr. Boquete was wrongly convicted of attempted sexual battery and assault in Florida in 1983. Two years later, he escaped Florida’s Glades Correctional Institution — a place he never should have been — and lived on the run as a fugitive from injustice for 11 years before he was caught and reincarcerated. The Innocence Project then took up his case, and he was freed by the courts — with an apology from the State Attorney’s Office — in 2006.

    Because of Mr. Boquete’s non-violent criminal record from the years he was a prison escapee, Florida will not compensate Mr. Boquete for any of the time he spent wrongly imprisoned. It is the only state in the country with a so-called “clean hands ban” in its compensation statute — one that prevents people with unrelated convictions from being compensated altogether.

    Mr. Boquete lives on a disability subsidy of $783 per month.

    Since his exoneration in 2006, Mr. Boquete has frequently been homeless. Due to his post-traumatic stress disorder diagnosis, he is unable to work full-time and lives on a disability subsidy of $783 per month.

    Mr. Boquete, along with Robert DuBoise, Clemente Aguirre, Nathan Meyers, and other exonerees, the Innocence Project and the Florida Innocence Project have lobbied the Florida legislature to remove the “clean hands” clause as well as a prohibitively short 90-day filing deadline that prevents many exonerees from actually being compensated. This year, two bills — S.B. 526 and H.B. 241 — could bring justice to Mr. Boquete, Mr. DuBoise, and many others exonerated people who are struggling to make ends meet after spending decades in prison for crimes they did not commit.

    Mr. Boquete maintains a high spirit and wants people to know that while he is homeless and urges the state of Florida to fix the law, he holds onto joy through boating, fishing, and his love for children. He returned to Cuba for the first time in 2018, raising money and supplies to give back to his hometown, where many live below the poverty line. He dreams of opening a gym, Real Innocent Fugitive, to give children whose families are experiencing poverty a chance to become boxers and athletes in Miami. 

    “I want to get the youth on a positive path. I want to use my story to do beautiful things,” Mr. Boquete said. 

     

    A Run for Freedom: Orlando Boquete’s Story

    Presented by Innocence Project

    A verytaste Co-Production

    Director: Alicia Maule 

    Producers: Alicia Maule, Daniel Selby

    Translation: Isabel Vasquez

    Cinematography: Johnny Castle, Nick Castle, VeryTaste

    The post Watch: A Run For Freedom: Orlando Boquete’s Story appeared first on Innocence Project.

    This post was originally published on Innocence Project.

  • It’s Not ‘Encouraging’ That Mostly the Disabled Die Despite Covid Shots

     

    Good Morning America: CDC Director One on One

    CDC director Rochelle Wallensky told Good Morning America (1/7/22) that it was “really encouraging news” that the vaccinated people dying from Covid were mostly “people who were unwell to begin with.”

    Asked on ABC‘s Good Morning America (1/7/22) about “encouraging headlines that we’re talking about this morning, this new study showing just how well vaccines are working to prevent severe illness,” CDC director Rochelle Wallensky responded:

    The overwhelming number of deaths, over 75%, occurred in people who had at least four comorbidities, so really these are people who were unwell to begin with. And, yes, really encouraging news in the context of Omicron; this means not only just to get your primary series but to get your booster series, and, yes, we’re really encouraged by these results.

    As the hashtag #MyDisabledLifeIsWorthSaving began trending on Twitter, disability rights activists like Ady Barkan were asking, “Are our deaths less tragic? Are our lives less valuable? Are we less human?”

    Because they were picked up by right-wingers as proof that Covid concerns are overblown, media outlets like CNN (1/12/22) went into factcheck mode to explain that Wallensky’s comments were distorted and taken from context.

    CNN: Fact check: Right-wing figures falsely describe CDC director's comments about Covid-19 deaths

    CNN‘s factcheck (1/12/22) focused on the false claim that Covid-19 is not a real threat—and not on the genuine implication that it’s “really encouraging” when mostly people with health issues die from Covid when they’re vaccinated.

    Crucial seconds were missing from the tape, you see, which would clarify that Wallensky was referring specifically to the results of a study that found that a majority of deaths among the vaccinated involved comorbidities, not deaths overall. The subtext seemed to be that it’s a confusing time and, just maybe, some people might be looking for something to be offended by.

    Yeah, no. Information may certainly be unclear or shift with time, but priorities and attitudes remain—and those reflected in a statement that, within whatever subgroup, fatalities affecting primarily those with preexisting health issues are “good news” is disturbing. (For what it’s worth, some of the things the CDC defines as comorbidities: diabetes, high blood pressure, Down’s syndrome, cystic fibrosis, obesity, pregnancy and asthma.)

    Susan Henderson of the Disability Rights Education & Defense Fund did not misunderstand the context of Wallensky’s comment. She wrote in an open letter that the message from the CDC was not only

    abhorrent, it perpetuates widely and wrongly held perceptions that disabled people have a worse quality of life than nondisabled people and our lives are more expendable.

    When physicians hold these beliefs, and they do…the outcomes for disabled people, especially during a pandemic such as we are living through, can be fatal.

    Messages from the head of the CDC must convey that all lives are valuable, and the loss of any life from COVID-19, whether it is the life of a person with a disability, an older adult, or a 32-year-old with no known disabilities, is a tragedy.

    As Barkan said:

    We live in the wealthiest country in history. We can afford to give healthcare to everyone. We can afford enough masks, tests and medical staff to keep everyone safe. But that requires seeing the full humanity of each of us.

    News media could aid that effort if they would set aside the frame of back-and-forth political gotchas, and assume the value of all human beings, and our right to live full lives, as not a talking point but a premise.

    The post It’s Not ‘Encouraging’ That Mostly the Disabled Die Despite Covid Shots appeared first on FAIR.

    This post was originally published on FAIR.

  • Despite the Downing Street party scandal, Labour still managed to shame itself

    The scandal over Downing Street partying while the rest of us were under coronavirus (Covid-19) restrictions is rumbling on. So, you’d think that Keir Starmer’s Labour would want to shame Boris Johnson’s team at every opportunity. But that’s not the case. Because a vote in parliament managed to shame Labour itself.

    Labour: the abstaining way

    The welfare cap is a limit the government is allowed to spend on social security. FYI – it’s not the same as the so-called benefit cap, which limits how much the Department for Work and Pensions (DWP) can give a household. On Monday 10 January, there was a parliamentary vote to keep the cap in place and set it at a certain level, and most Labour MPs abstained. This caused uproar among many people, because the welfare cap affects millions of people.

    Con-Lib social security restrictions

    In 2014, the Tory-Lib Dem coalition government introduced the welfare cap. It was part of its Charter for Budget Responsibility. This is a government document saying how much it can spend.

    Every so often, parliament reviews the welfare cap. For example, as a House of Commons briefing paper said:

    The cap is only formally assessed at the first Budget or first fiscal update of each new Parliament.

    The current welfare cap was set in the Spring Budget 2020, and the Treasury said it would apply until 2024/25. It set it at £137.2bn. The Treasury also said this was with a margin of 3%. That is, the government could spend 3% extra or less on either side of £137.2bn. During 2021’s Autumn Budget, however, the Tories said they would be changing the welfare cap again.

    Hitting the poorest families

    The government has now increased the amount it can spend on social security. The figure is set at £138.3bn, with a margin of 2%. This is a £1.1bn increase, or 0.8%. On the face of it, it seems that the Tories have increased social security spending. But in reality, this is not really the case. For example, when you factor in inflation (the cost of everything we buy), it wipes the Tories’ welfare cap increase out, because Consumer Prices Index inflation rose by 4.6% in the 12 months to November 2021 alone.

    Then, you also have the fact that due to the pandemic and changes to DWP policy, there are more people claiming social security. For example, the number of people claiming Universal Credit more than doubled between February 2020 and May 2021. And as of October 2021, this figure had barely changed. So, the 0.8% increase in spending may not even cover that.

    The cap also means that if there is a continued increase in social security claimants, the government doesn’t have to increase the welfare budget accordingly. This may inevitably lead to reduced benefit rates for claimants

    Get out of jail free card

    Within the welfare cap update was a change to how it works. And it’s one that’s potentially more worrying.

    The Tory government has updated the terms of the Charter of Budget Responsibility. In it, it has a ‘get out’ clause for the welfare cap. In short, if there is what the government calls a “negative shock” to the economy, it doesn’t have to stick to the welfare cap. That is, if there’s a financial crash (or the pandemic worsens), the Tories can cut spending on social security to below the cap. And while the Tories could use this to increase welfare spending, the party’s track record makes this highly unlikely.

    Despite this, most Labour MPs thought it was okay to abstain on 10 January’s vote.

    The wrong message

    Of course, even if the Labour MPs had voted against the cap, the Tories would still have won. But that’s not really the point. It sends out the message that Labour isn’t fully against the welfare cap. Or, as one SNP MP told the National:

    As the UK faces a Tory-made cost-of-living crisis, it is the duty of the opposition to fight for those being directly affected. However, yet again, the Labour Party are posted missing and continue to let down the UK’s working class.

    Starmer’s party was completely on the wrong side of the argument here. So, even when the Tory government is under huge pressure, Labour still manages to look uncaring and ‘Tory-lite’. Shameful.

    Featured image via Guardian News – YouTube

    By Steve Topple

    This post was originally published on The Canary.

  • The DWP ordered a sick man who later died of his illness to leave hospital

    The Department for Work and Pensions (DWP) told a severely ill claimant to leave hospital to make his social security claim. He later died. Now, a coroner wants answers from the department. But the case is sadly just one in a long line of catastrophic failures by the DWP – ones which have repeatedly involved claimants’ deaths.

    Terence Talbot

    Disability News Service (DNS) first reported on the case of Terence Talbot. He lived with a rare disease called drug reaction with eosinophilia and systemic symptoms (DRESS), or drug hypersensitivity syndrome. It’s where people react to certain medications. Symptoms usually first include a high temperature and skin rash. In some cases it can be life-threatening and lead to organ failure. Sadly, this happened to Talbot.

    He lived with bipolar disorder. Doctors put him on olanzapine and risperidone which are drugs to help treat the condition. This was while they detained him under the Mental Health Act. The problem is that the drugs caused Talbot to develop DRESS. As the coroner’s report stated, doctors diagnosed it in October 2019 after they gave him the drugs.  It noted that Talbot, while being an inpatient at a psychiatric hospital, also:

    had multiple discharges from acute hospital following admission for symptoms of DRESS syndrome with severe exfoliative dermatitis. Prescribed emollients [skin treatments, like cream] were recorded as self administered although Mr Talbot could not apply them effectively himself. Food, fluid and nutrition was not adequate to meet Mr. Talbot’s needs and nasogastric feeding was commenced on 26th February 2020… this feeding did not meet his needs… He was treated for aspiration pneumonia on 3rd March and suffered a left sided pneumothorax [collapsed lung] on 4th March treated with drain insertion. Mr Talbot was diagnosed with empyema [pus in the chest cavity] treated with antibiotics and his DRESS Syndrome failed to improve and he was placed on end-of-life care.

    Talbot died of multiple organ failure on 9 April 2020. This was due to the DRESS causing empyema and pneumonia. And at some point during this period, the DWP got involved.

    The DWP gets involved

    It is unclear from the coroner’s report just when or how the DWP got in touch with Talbot. But the department contacted him while he was in hospital, saying he had to attend a Jobcentre about his social security claim. The coroner’s report noted that this was instead of him making an “electronic claim”. As the coroner stated:

    I heard from all the doctors and a senior nurse in this case who have a considerable experience across a range of specialties and across several different NHS Trusts that they have never experienced nor heard of a case where a severely ill inpatient was required by the Department of Work & Pensions to leave hospital to attend its offices in person to make a claim for welfare benefits. Terence Talbot was suffering with a mental disorder and an exceptionally rare and complex disease with a risk of death and suffering severe exfoliative dermatitis that rendered him very vulnerable to infection.

    DNS editor John Pring noted on Twitter that:

    there’s no evidence DWP’s actions led to his death; the facts are still fairly scarce at this point so we also don’t know if Terence Talbot actually attended the jobcentre or was too ill.

    Answers are needed

    What’s clear is that the coroner thinks the DWP has questions to answer. She’s told work and pensions secretary Thérèse Coffey that she has to respond to the report by 28 January:

    Your response must contain details of action taken or proposed to be taken, setting out the timetable for action. Otherwise, you must explain why no action is proposed.

    A claimant’s death and the DWP’s involvement while they were severely unwell is sadly not uncommon. As The Canary previously reported, it has carried out dozens of reviews in the past few years into cases like Talbot’s. There are also countless specific cases like:

    • David Clapson. He was diabetic and died in 2013 after the DWP stopped his social security – leaving him without enough electric to run his fridge which he kept his insulin in. It also left him with barely any food.
    • Jodey Whiting. She took her own life in 2017 after the DWP stopped her social security.
    • Errol Graham. He starved to death in 2018 after the DWP stopped his social security.

    Moreover, Talbot’s case is not wholly unique. Weighing just six stone, Stephen Smith died from multiple health problems in 2019 after the DWP stopped his social security. But before that, the department left him no choice but to leave hospital to go to a tribunal to appeal it denying him social security. According the Liverpool Echo his appeal was successful “after a tribunal judge saw he could barely walk down the street let alone hold down a job”. He died shortly after this.

    We also know the DWP has already destroyed dozens of reports into claimant deaths.

    35,000 dead

    A DWP spokesperson told DNS:

    Our condolences are with Mr Talbot’s family. We are considering the report and will respond in due course.

    As The Canary previously reported, around 35,000 claimants have died across several years:

    They died either waiting for the DWP to sort their claims or after it said they were well enough to work or start moving towards work. Moreover, in 2018 alone there could have been 750 (if not more) people who took their own lives while claiming from the DWP. But across five years, the department only reviewed 69 cases of people taking their own lives.

    Yet the DWP still says the issue of claimants dying on its watch isn’t a “systemic” problem.

    The problem is systemic

    It’s unclear at this stage just what the DWP’s specific actions were in Talbot’s case. Once it has responded to the coroner, we will know more. But the very fact that it would even attempt to make a seriously ill claimant leave hospital is damning. It points to a wider problem in the department of, at best, systemic failures. At worst, it shows a culture of neglect and intransigence to the lives of the very people it’s supposed to be supporting.

    Featured image via Ann Larie Valentine – Flickr, recoloured and cropped to 770 x 403 licenced under CC BY-SA 2.0, and Wikimedia 

    By Steve Topple

    This post was originally published on The Canary.

  • The government just turned a celebration of disability into an accessibility nightmare

    It’s only the start of January. But already the government has shown that blind and low vision people are an afterthought. Because its Disability Unit managed to create a video about them which was inaccessible.

    World Braille Day

    Tuesday 4 January was World Braille Day. As the UN explained:

    World Braille Day, celebrated since 2019, is observed to raise awareness of the importance of Braille as a means of communication in the full realization of the human rights for blind and partially sighted people…

    Braille is a tactile representation of alphabetic and numerical symbols using six dots to represent each letter and number, and even musical, mathematical and scientific symbols.

    It also noted that braille:

    is essential in the context of education, freedom of expression and opinion, as well as social inclusion, as reflected in article 2 of the Convention on the Rights of Persons with Disabilities.

    But the government clearly forgot the “social inclusion” aspect of Twitter. Because it managed to put content out about braille that was inaccessible to blind and low vision people.

    Accessibility?

    The Disability Unit is part of the Cabinet Office. It’s been responsible for publishing the government’s new disability strategy. On 4 January, the Disability Unit released a video for World Braille Day. It gave a brief overview of the subject. But the video had no narration. Therefore, it was inaccessible to blind and low vision people:

    People also pointed out that the Disability Unit may have made some mistakes with its history of braille claims:

    But the Disability Unit was not the only department that put out inaccessible content for World Braille Day.

    The DWP: a repeated problem

    The Department for Work and Pensions (DWP) put out a tweet with an image that had no alt text. That is, blind and low vision people would not know what the image was of nor what text was in it:

    Not that this was the first time the DWP has done this. Its last image-based tweet also did not have alt text:

     

    Blind people: clearly an afterthought

    The Canary asked the Cabinet Office for comment. A government Equality Hub spokesperson said:

    The Government’s Equality Hub is committed to providing accessible content on all of our channels.

    In line with our commitment, the text in this video was also tweeted in order to ensure that it is accessible to screen readers.

    But as Connor Scott-Gardner said on Twitter:

    Braille is an important part of our cultural history as blind people. I’m curious to know why a decision was made to produce a video that is inaccessible to us?

    So, it seems that for the Conservative government, blind and low vision people are an afterthought. As one Twitter user summed up:

    this must be a joke?!! No narration or audio description. There is absolutely zero excuse for this. It must be a deliberate and egregious demonstration of tokenism. This government’s default. Not only pretend to give a fuck but disenfranchise them simultaneously!

    Let’s hope the government does better for the rest of the year. But sadly, that’s probably unlikely.

    Featured image via the Disability Unit – screengrab

    By Steve Topple

    This post was originally published on The Canary.

  • Florida Agency Spent $200K on PR Firm After Being Accused of Withholding Aid

    Mother kissing newborn baby's head in silhouette

    A Florida agency tasked with disbursing state funds to assist people born with neurological disorders was recently accused of withholding aid – but instead of pursuing change internally, the agency spent hundreds of thousands of dollars hiring a public relations firm, a new ProPublica investigation found.

    The Birth-Related Neurological Injury Compensation Association (NICA) spent nearly $200,000 hiring a PR firm while it was under investigation by ProPublica and the Miami Herald. The news outlets were in the midst of uncovering a “no, no, no culture” from the agency, one parent told reporters.

    That parent, Dan Bookhout, said that he constantly had to fight NICA for aid – so it was suspicious when the agency suddenly offered him a $30,000 device that would help his 5-year-old daughter walk. The agency also asked Bookhout to help promote the device to other parents.

    That offer appears to have been part of a strategy recommended by the PR firm Sachs Media. While NICA rejected requests for wheelchairs and other aid for people with disabilities, it solicited Sachs to help the agency get out ahead of reporting on its alleged corruption.

    “The Miami Herald has been conducting an investigation into NICA for several months, submitting numerous requests for public records and interviews,” Sachs executive Ryan Cohn wrote in an email to NICA in late 2019. “We see this as the path forward to win in the court of public opinion and to protect your mission and the future of the organization.”

    After offering the device to Bookhout, the PR firm placed two stories in a local newspaper, praising the agency and its offer to buy devices to help children walk. The agency also offered contact information for parents in the program to the firm, despite having previously withheld that information from parents who sought to form a community around taking care of children with disabilities.

    The agency, which has nearly $1.7 billion in funding, currently faces a state audit. NICA was created under a law that bars parents from suing medical officials, with the promise that they would receive financial assistance from the state – but reporters have found that families have largely been deprived of that aid. Instead, parents have had to fight to receive critical resources like drugs and blenders that make food more accessible. The agency has also repeatedly resisted distributing larger items like wheelchairs.

    Other investigations into the agency have come to a similar conclusion: ultimately, it appears that NICA’s priority isn’t distributing the assistance that parents were promised, but instead ensuring that it can continue to withhold aid.

    The Miami Herald found that since the agency’s founding in 1988, it has spent around $18 million on lawyers and lobbyists, often with the aim of engineering methods to decrease aid. They paid one pediatric neurologist $1.1 million, over the course of years, to prevent his own patients from receiving the aid that they needed, the Miami Herald reported.

    In response to these reports, the Florida legislature has issued reforms that mandate higher first-time payments and increasing other benefits. Parents say that there have been improvements since that bill was signed, but it’s unclear if the changes will be temporary.

    This post was originally published on Latest – Truthout.

  • Parents With Disabilities Face Medicare Rules That Exclude Parental Assistance

    Crystal Evans wants to wash her daughter’s hair. The problem is, she can’t use her home’s shower. Medicaid approved a bathroom modification in January 2020, but it didn’t include the shower portion, Evans said.

    “The physical layout is a barrier. I can’t help Sophie without flooding the bathroom,” she said. “It’s really awkward and dangerous for me. I fall in there a lot.”

    Evans, a single parent, has a neuromuscular disability. She uses a power chair and a ventilator and is unable to access much of her own home. Medicaid pays for a personal care assistant to come to her home every day, to help her with “activities of daily living” — preparing food for herself, for example. But help with parenting, according to state and federal law, is not covered.

    “Technically, [personal care assistants] are not supposed to do anything for your child. If they do, they’re doing you a favor,” Evans said. “They’ll leave dishes they think I didn’t eat out of. They won’t help change her. They’ll only wash my laundry. The washer and dryer in my house are downstairs. How am I supposed to wash my daughter’s clothes?”

    Her personal care assistants are technically prohibited from helping her with any parenting task. “It’s like [home care agencies] don’t want the child to exist,” Evans said.

    According to a 2012 report from the National Council on Disability, an estimated 4.1 million parents in the United States have a disability.

    “People don’t really expect disabled people to be parents,” said Robyn Powell, a law professor at Stetson University. Powell is principal author of the report and one of the foremost experts on parents with disabilities in the United States.

    It isn’t clear how many people using home care services have parenting responsibilities — that data has not been collected. But Powell says that Evans’ situation is not at all uncommon. If the government pays for your personal care assistant, the assistant can’t help with tasks for anyone else in the house — and that includes parenting duties. That means sometimes parents will go to extremes to make sure their child is cared for.

    “I’ve heard of parents that had their [personal care assistant] come in and make them a sandwich and leave, and the parent would give the sandwich to their child. They’d skip lunch every day to feed their child. It’s absurd to me,” Powell said.

    According to Powell, many parents with disabilities are afraid to speak up about struggling to do everyday parenting tasks without assistance, afraid of being deemed unfit parents. These fears are not unfounded. Parents with disabilities are significantly more likely to lose their children to the child welfare system than the general population, according to the National Research Center for Parents with Disabilities.

    According to Powell, solving the problem of assistance for parents with disabilities would be relatively simple: “All you have to do is add parenting as an instrumental activity of daily living [under the law].”

    A recommendation for the Centers for Medicare and Medicaid Services (CMS) to expand what personal care assistants can do was made in 2012 by the National Council on Disability, an independent federal agency meant to advise the president and Congress on disability issues. However, the recommendation has not been adopted.

    The move is “simple” because it is a regulatory change and would circumvent Congress and the legislative process, Powell said. “It’s as simple as anything involving the government is,” Powell conceded. It isn’t clear why the recommendation was never adopted. CMS did not comment in time for publication.

    But though there has been no movement on the federal level, some states have started to accept these recommendations. Minnesota is one of the first to address the issue at a state level. In June, the state passed a pilot program as part of an omnibus health and human services bill. The provision would allow personal care assistants to do “supportive parenting services” like washing a child’s laundry, not just their client’s. The pilot program is set to begin in 2024 and will begin by funding research and a stakeholder group to evaluate the scope of the issue in the state.

    Nikki Villavicencio is a Maplewood, Minnesota, city councilmember and one of the many parents with disabilities who advocated for the pilot program. She and her partner are disabled and use power wheelchairs to get around. Her daughter, Alexandria, is 8 years old and relatively independent, but when she was a baby, things were more difficult. Villavicencio and her partner had to make do. Villavicencio learned how to change diapers with her feet, since she has limited mobility in her arms.

    Still Villavicencio and her partner needed more help and weren’t getting it. “The agency says [to staff], ‘You cannot hand the child a plate, you cannot cut up her food, you cannot do her laundry.’” she recalled.

    They ended up relying on a complex and sometimes uncertain web of informal support. “My partner and I are very strong advocates and know how to speak up for ourselves. We’re highly engaged in our community. But not every disabled person has that,” Villavicencio said.

    Though the program for now is just a pilot, Villavicencio is fiercely proud of the new law. “It’s going to set a precedent that parenting with a disability is a completely normal thing,” she told The 19th.

    Villavicencio also stressed the importance of accessibility beyond home care. Adjustments to physical space can make a huge difference in independence. While Minnesota has a preexisting program to adapt people’s homes, it can be difficult to access. Villavicencio says it took four and a half years to get the modifications they needed to prepare food for themselves and their daughter without assistance.

    “We have an accessible kitchen now. So when we don’t have care, we can at least feed ourselves,” she explained.

    “It has nothing to do with whether a disabled person can or cannot parent,” Villavicencio continued. “Instead, it has to do with the environment that they’re in.”

    This post was originally published on Latest – Truthout.

  • ME: the year in review – sickness, lies, and subversion

    Myalgic encephalomyelitis (ME) is a disease that has repeatedly hit the headlines in 2021. Sadly, this has often not been for the right reasons. Patients and their advocates fought the system and parts of the medical establishment – as well as their own bodies. But within this are stories of hope and resilience against all the odds.

    People with ME: a traumatic year

    For people living with ME, their advocates, families, and supporters, 2021 has been traumatic, at best. On a basic level, you have a debilitating and poorly-treated neuroimmune disease that affects every aspect of the patient and their loved one’s lives. For many, the worst part is a worsening of symptoms brought on by physical activities, mental activities, or both. This is called post-exertional malaise (PEM). In layman’s terms, every time a person living with ME does any form of exertion, they get even sicker. It’s one of the cruellest parts of the disease, because tasks most people thinks of as ‘normal’ – like washing up – can make a person with ME really ill.

    Light amid the perpetual dark

    Still, each person living with ME also has moments of light amid the often perpetual dark; however fleeting they may be. I asked the ME community on social media to tell me some of theirs. I had an overwhelming response, which was lovely. You can read all of people’s thoughts here. For example, Sibylle said:

    Don’t know if participation from Germany is „allowed“. The most positive thing that I experienced this year was: I saw for a couple of hours a horizon. Was outside from my prison. I saw sky, horizon. 2 hours. That’s it. Good night. And thank you!

    Carole said:

    Bittersweet but it’s been heartening to be joined by lots of LongCovid patients and hoping that someone, somewhere joins some dots and finds that elusive biomarker.

    ‘OmCatz’ said:

    Most positive. Surviving a stroke. Getting a tilty wheelchair that allowed me to fully enjoy Halloween for the first time in many, many! years. Dressed up and went trick or treat with grandkids. It was marvellous. Hugs for our community.

    Also, some people shared positive thoughts on ME as a whole. Tracey said:

    There seems to be more research going on and findings from Long Covid research may be relevant to ME/CFS. There's a really decent, committed and talented bunch of people within the ME/CFS community, that I've appreciated interacting with online. I seem to be improving a bit more!

    Alison said:

    Invest in ME winning £1000 from Ecclesiastical. They seem to be further sidelined and excluded yet have worked the hardest for the longest on the least, so this was a big boost. Hoping next years Conference and Colloquium will be busy with interest from covid researchers.

    NICE: corruption and subversion

    But this year has also seen parts of the medical establishment pile an additional raft of stress, upset, and trauma on to people who really don’t need or deserve it. The situation with the National Institute for Health and Care Excellence (NICE) has been central to this. My, what a tangled web some people have weaved. It’s a complex story that you can read about here. To sum up, NICE’s new guidelines removed harmful treatments for ME such as graded exercise therapy (GET). For some reason, NICE delayed their publication, causing many people great distress. This is because patients had been saying for years some treatments were harmful, but previously no one listened.

    We now know thanks to Freedom of Information (FOI) requests that some medical professionals from big organisations like Royal Colleges had been trying to subvert and corrupt NICE’s processes to keep the harmful treatments in place. This is because there’s a cartel of doctors who believe ME is psychosomatic. They’re quite happy to see people’s mental health be blamed for their physical illness. Thankfully, common sense and scientific rigour prevailed, and NICE published the guidelines as they were. The situation shone a telling light into what goes on behind closed doors in parts of the medical establishment.

    Enter long Covid

    The pandemic has also thrown long Covid into the mix. Strikingly similar to ME in many respects, it has for many come as some sort of surprise. There was shock! Shock, I tell you, that some people who caught a virus didn’t get better and were left chronically ill afterwards. Of course, if doctors had listened to ME patients and not certain sections of their own professions, the world would have been better prepared for long Covid and the lasting impact it will have on millions of people.

    Many people, including myself, did say this would happen before the UK first locked down. Since then, there has been welcome research into long Covid which could have an impact on ME. But among patients, there’s been an undeniable sense of disquiet and upset. For years, people with ME have been disbelieved, stigmatised, given incorrect treatment, or told it’s ‘all in their heads’. So it takes a global pandemic for people to start caring? Better late than never I guess, but it’s a bitter pill to swallow for many.

    The fight continued

    What shone through in 2021 is the continued fight ME patients and their loved ones have put up against those that would see them forgotten about or mistreated. Sally Callow, who runs the social enterprise ME Foggy Dog, is one such example. She has been a relentless force for change in the community despite living with ME herself. Her campaign for a harms reporting mechanism (including a petition) is vital. So please read more here and get involved.

    People with ME on social media shared my sentiments. You can read everyone’s comments here. Katy said:

    There are a few things apart from the guidelines. The strength of the ME community continues to be remarkable. There's some really promising research taking place which also includes long-covid There's now more evidence of the corruption of the BPS (biopsychosocial) cabal.

    Elle said:

    The support of the community. They’ve validated me and understood me in ways no one I know can. They’re there if it’s getting worse, as well as there to celebrate if there’s a little win, which has made me feel so comforted!

    Phil said:

    The immense efforts of #pwME and advocates raising awareness. The #ME community continues to amaze me with their humility, strength and kindness.

    Then, there is the Chronic Collaboration – an activist and advocacy organisation founded by my partner and person with ME Nicola Jeffery. It was her idea, and the result was what I consider to be a groundbreaking protest outside NICE HQ and a number five Twitter trend. People with ME are usually too ill to protest, or the groups representing them tend to avoid it. So, to have an in-person protest alongside an online one was quite unique. And I hope we represented the community as well as we could.

    2022: uncharted territory

    So, what will 2022 hold for people with ME? It’s difficult to say. I’m personally not confident that harmful treatments like GET will be scrapped by the medical profession despite NICE’s new guidelines. Moreover, the story of ME is an infinitely complex and multi-layered one. I tend to write about it a fair bit. But even I haven’t explored many aspects of this story nor its full history, or how it all intersects with the agendas of corporations, the government, and certain medical professionals.

    In the meantime, I would like to wish everyone living with ME, their families, loved ones, advocates, and supporters a peaceful New Year. The holiday season is never easy and often not pleasant for chronically ill and disabled people, so wherever you are, and whatever you’re doing, I hope you find some comfort and respite. Please know that me, and The Canary, have your backs. And we’ll continue fighting for justice and a resolution for all of you in 2022.

    Featured image via the ME Action Network – YouTube

    By Steve Topple

    This post was originally published on The Canary.

  • DWP: the year in review – cuts, chaos and court battles

    2021 saw the Department for Work and Pensions (DWP) repeatedly hit the headlines. In this article, The Canary looks back at some of the big DWP stories from the year. But we’re also reminding our readers that even in the face of adversity, hope and triumph can prevail – as the past 12 months in the world of social security shows.

    A cold winter

    January 2021 started much like many other years at the DWP: with conscious cruelty and disregard for claimants. First, and after pausing sanctions during most of 2020, it brought them back in again, albeit via the backdoor. This was despite a national lockdown being in full force. Meanwhile, DWP boss Therese Coffey dismissed a parliamentary inquiry into how the government measures child poverty. Of course, she conveniently ignored the fact that the number of kids living in appalling conditions was over four million.

    In February, the High Court ruled that a Universal Credit policy was unlawful. Specifically, it was that parents having to pay childcare costs upfront and then claim the money back from the DWP was “disproportionately prejudicial” against women. But this wasn’t the end of the story. The DWP appealed, and the Court of Appeal ruled in its favour. So, the case will go to the Supreme Court next year for a final decision. As well as this, another new report came out – finding that destitution exploded during the pandemic.

    Spring: Universal Credit in the spotlight

    But throughout 2021, Universal Credit was at the forefront of many people’s minds – namely due to controversy over the £20-a-week uplift. A report in February slammed it as “inadequate”. Then, March saw protests over the fact chancellor Rishi Sunak had not uplifted legacy benefits like Employment and Support Allowance (ESA) in line with Universal Credit. But an interview with Martin Lewis revealed why Sunak had not done this. Because he said the £20-a-week increase was just for workers.

    Sunak’s discriminatory actions didn’t go unnoticed, as claimants brought a legal case against the government over its refusal to uplift legacy benefits. The outcome of it will be known in 2022. April saw two pieces of damning research into the DWP. One looked at the two-child limit on claiming certain benefits. It found more children in poverty and abortions increasing; The Canary branded this government “eugenics”. Then, another found that hundreds of thousands of people could have claimed Universal Credit during the pandemic – but didn’t.

    A summer of discontent and heartache

    Across May and then the summer, much of people’s focus was on fighting the Tories’ planned cut to Universal Credit. But two other stories stood out. Jodey Whiting took her own life after the DWP stopped her benefits. Her mother has been fighting ever since for a new inquest into her daughter’s death, which will look at the DWP’s role. As The Canary pointed out, around 35,000 people died across several years:

    They died either waiting for the DWP to sort their claims or after it said they were well enough to work or start moving towards work. Moreover, in 2018 alone there could have been 750 (if not more) people who took their own lives while claiming from the DWP. But across five years, the department only reviewed 69 cases of people taking their own lives.

    Clearly the DWP thinks that nearly 35,000 (recorded) deaths doesn’t constitute a systemic problem.

    This point was then put into even sharper focus. Because as Disability News Service (DNS) first reported, and The Canary followed up on, the DWP may have secretly investigated twice as many claimant deaths as in 2019 – with potentially countless numbers of them involving people taking their own lives.

    Autumn brings chaos

    September onward saw more people fighting back against the Universal Credit cut. But sadly it was to no avail – as the cut happened anyway, affecting around 3.4 million children. But even in the midst of this, people we’re still winning battles against the DWP. For example, a court case in September forced the department to change its rules around sanctions and taking money off people. And another court case was looming as well – over severely disabled people losing money on Universal Credit.

    We also found out that the UN was preparing to investigate the UK government and DWP (again) over its treatment of disabled people. Then, Sunak’s October budget and his tinkering with Universal Credit left millions of people worse off. In November, we found out that the DWP and tribunals were having to overturn a wrong benefits decision by the department every minute of the working day. There was also the impact of a court case from 2019, which saw the DWP having to look at around 340,000 people’s claims – because it might be underpaying them.

    December chills ahead of 2022

    And finally, just to add insult to injury in December the Mirror exposed that Coffey’s DWP office staff were ordering takeaways and drinking booze together while the rest of us were in lockdown in late 2020. Days before the revelations, Tories laughed and groaned during a parliamentary debate about disabled people. That incident takes on a whole, new meaning now.

    As The Canary previously summed up:

    For years, the DWP and its staff have treated claimants with contempt and disregard. This led to a report by the UN which accused successive governments and the DWP of “grave” and “systematic” violations of chronically ill and disabled people’s human rights. The chair of the UN committee who did the report said they had created a “human catastrophe”.

    Will 2022 be any different? It seems unlikely, given we have a Tory government. But what 2021 did show was that sometimes, battles against the DWP can be won. And moreover, the year was filled by people fighting back against the department. That surely needs to continue in 2022.

    Featured image via Frantisek_Krejci – Pixabay and Wikimedia 

    By Steve Topple

    This post was originally published on The Canary.

  • We need infrastructure to support each other for the long haul, not just through emergencies like coronavirus

    The UK has been experiencing its highest ever rates of coronavirus (Covid-19) infections in recent weeks. As communities brace themselves for another wave of the pandemic, it’s a good time to take a look back at the different grassroots initiatives that have been set up to help deal with the many crises caused by the virus.

    When the coronavirus pandemic hit in 2020, thousands of grassroots groups were set up at a street level, aimed at supporting people through the lockdown. Solidarity funds were created to give people financial support, and community food cooperatives were set up around the UK.

    For a short time, ‘mutual aid’ became a household buzzphrase.

    Looking back, a lot of these emergency responses to the coronavirus pandemic were – let’s be honest – a flash in the pan. Short lived projects, which ran out of steam as the lockdowns went on. Others – such as Bristol’s BASE & Roses mutual aid food distribution project – have developed into longer term pieces of infrastructure.

    The mutual aid groups that have proved the most resilient are those which were not – in fact – an emergency response to coronavirus but were intended as long term responses to the oppressive society we live in. Projects like Cooperation Kentish Town, Cooperation Birmingham, and UK Mutual Aid are all grassroots initiatives that existed before the pandemic but were able to respond effectively to the emergency situation posed by coronavirus.

    Shoal Collective – a cooperative of radical writers that I’m part of – interviewed Ella about her experience of a UK mutual aid group, and about how she received support from the group during the pandemic. She’s asked us not to mention the name of the group to help protect the privacy of the people mentioned in this article.

    Mutual aid helps us survive through crises

    Shoal Collective asked Ella why the group was set up:

    The group is not specifically an anarchist group, but it’s kind of – it’s a group run by disabled queers. And it actually got set up when the Tories got in the last time [in 2019]. So it wasn’t set up specifically for the pandemic, it was set up kind of in the knowledge that with the Tories getting such a huge majority and continuing to go down the path that they’re going down, a lot of people were going to need support through mutual aid, particularly disabled people.

    People can post requests and offers to the [Facebook] page. For example, people might ask for financial support if their benefits have been stopped, or for advice. Sometimes people need or offer practical support, other times it’s emotional. People also give away things they don’t need.

    Ella explained:

    Often people who’ve been in a similar situation themselves will reply and say “I was in that situation and I did this” or “have you tried this?”

    So it’s a different feel to the newer more mainstream mutual aid groups because there is no division between the people offering support and those being supported.

    “An ableist culture”

    The group is specifically a forum for mutual aid for disabled people. According to Ella:

    I think it’s a very specific mutual aid group because it’s run by disabled people. So it’s a bit different from the ones that popped up around the pandemic, which had a bit more of a charity feel. Don’t get me wrong [all of the mutual aid groups that were set up at the beginning of the pandemic were] very positive and much needed. But I noticed that people had this binary in their head that either you were a ‘helper’ or you were ‘being helped’.

    More people seemed to engage as a ‘giver’ of help rather than a receiver. This worried me in terms of Covid safety. I also found it interesting that a lot of us get our sense of self worth from feeling that we are invulnerable and we can help others who are more vulnerable. We have an ableist culture where we don’t feel comfortable asking for help.’

    Young disabled people are more used to thinking of themselves in need of support but that this isn’t a negative thing, and they also support each other. And I think that’s why disabled people were really well placed at the start of the pandemic to coordinate support, because they had so much experience of it already.

    Using mutual aid

    Ella described the confusion caused by the government for vulnerable people:

    I thought I was vulnerable to the virus particularly in the beginning because I’m asthmatic. People who were clinically extremely vulnerable (CEV) were shielding, they were not supposed to leave the house at all. And those of us in the clinically vulnerable group were in between, we were supposed to be very careful, but the government didn’t explain what that meant. Because we were all supposed to be social distancing anyway.

    Ella’s household was also affected financially during the lockdown.

    I had a part time job as a PA, a personal assistant, for someone who was extremely vulnerable, and my flatmate Dominique was a sex worker, so during the first lockdown neither of us were able to work. My employer, who was the person I did personal assistance for, was really nice, so I was still being paid. But of course Dominique wasn’t. I was able to access money through family and the benefits system to support us through those few months.

    When Ella and Dominique were due to return to work, the situation became more complex:

    At the end of June 2020 I wanted to go back to my work and my flatmate wanted to go back to her work. But it wasn’t safe for me to go and do housework for someone who was CEV while Dominique was doing sex work.

    I reached out to someone in the mutual aid group who I vaguely knew. They had mentioned in the group that they had a spare room and that they and their partner work from home. So I stayed there for a few months and it was really helpful. I wanted to be with other people but to be safe and to be able to do my job safely. Dominique’s work is important to her as well and she had a friend who was looking for a room, so it worked out OK.

    “I still have a lot of anger”

    Ella felt that the UK government shouldn’t have allowed people like her and her flatmate to be put in that situation to begin with. According to Ella:

    I still have a lot of anger about the way we’ve all been treated during the pandemic by the government. Neither of us should have had to change our living situation.

    The way the government didn’t accommodate marginalised people… it’s inhumane to expect disabled people to stay at home alone and not leave the house for an extended period of time. It’s also just not practical because we live interdependent lives. Huge numbers of disabled people have personal assistants or carers, or live in households with others who go out to work, and many of them have a lot of medical appointments. The epidemiologist Devi Sridhar said that keeping cases low in general through a better Test and Trace system would have been a better way of protecting people. For me that also means paying people properly when they need to self-isolate, and giving out good masks to everyone, like they did in some Asian countries where deaths were much lower.

    Ella pointed out that sex workers were not supported financially during the pandemic:

    It’s probably quite common for someone who is a PA or in a care role to be living with someone who’s doing Covid-risky jobs [like sex work] because they are both quite low paid jobs that people who are marginalised tend to do. And it’s probably not uncommon for disabled people to do sex work themselves, because it’s flexible work.

    Ella also pointed out that the government hadn’t set up any sort of priority vaccination scheme for sex workers, unlike some other countries like Bangladesh.

    Unnecessary deaths

    Ella said that she is still angry about how the government has handled the pandemic. She said:

    We’re governed by these neoliberal extremists who are so loath to restrict business in any way that they’re willing to sacrifice 130,000 people [this figure has risen to 147,000 since the interview took place]. And that’s just the people we know have died from Covid. It doesn’t include all the people who died because they couldn’t get treated for other health conditions, or from suicide or interpersonal violence which increased during the lockdowns. The lockdowns were needed but they wouldn’t have been needed if the government had prepared properly and funded the health service properly to begin with.

    Ella went on:

    It also annoys me that it’s divided people from different marginalised groups because we had different needs during the pandemic, but it didn’t have to be like that. And I think that was deliberate.

    Both a disaster and an opportunity to create something new

    Ella felt that the mutual aid response to the coronavirus pandemic in the UK had been an opportunity for real radical change:

    At the start of the pandemic, I was very scared and worried. But I was also excited, because I thought this is a moment we’re going to have real radical change. The public sector and capitalism is collapsing and the people are taking over. The idea of mutual aid suddenly became very mainstream.

    The group that Ella was in gained a lot more followers when the pandemic started, but this has since petered out and gone back to a similar level to before the pandemic. Ella explained why she thought the group had been resilient enough to carry on:

    Maybe the group has outlasted the pandemic because there’s more of a shared political affinity. There was already a prior commitment to mutual aid because of people’s fear and horror of another term of the Tories. Mutual aid is a foundation of queer and disabled politics as well as anarcho communist politics.

    You can read about the black roots of mutual aid here

    I also heard about local councils sucking the life out of some Covid mutual aid groups, but there was no local government involvement in this group or anything like that.

    Mutual aid is something we need to build long term

    The interwoven crises caused by coronavirus are not isolated emergencies; in fact, our society is constantly in crisis. This crisis is caused by the dominant ideology of our society, which tells us that profit is more important than people, and that the only solution to our problems comes from Westminster.

    We need to challenge this ideology and create a new narrative that centres on people, communities, and the Earth instead of power and profit. We also need to understand that – if we are not going to be powerless victims of capitalism’s never-ending crises – we need to build resilient grassroots infrastructure that begins to address and meet the needs of our communities. Only then can we build our own autonomy, instead of relying on a state that is always going to fail us.

    Tom Anderson is part of the Shoal Collective, a cooperative producing writing for social justice and a world beyond capitalism. This article is part of Shoal’s ongoing work focusing on mutual aid.

    By Tom Anderson

    This post was originally published on The Canary.

  • NICE is at the centre of another growing scandal

    The National Institute for Health and Care Excellence (NICE) is at the centre of another growing scandal. This time, it’s over its guidelines for treating people living with chronic pain. NICE has removed various pharmaceutical treatment options to the dismay of patients and charities alike – because they can be effective for some people.

    So, one campaigner has launched a petition. And it’s sorely needed. Because the situation has echoes of a scandal over NICE’s guidelines for another chronic illness: ME – this time where some medical professionals tried to corrupt and subvert NICE’s processes and those in charge of them.

    NICE: chronic pain guidelines

    Millions of people in the UK live with chronic pain. There are varying estimates on the approximate number – ranging from 15.5 million to 28 million. Whatever the number, the debilitating life that accompanies being constantly in pain is widespread. So, in April NICE published its finalised guidelines on treatment for chronic pain. It redefined what it considers pain to be breaking chronic pain into two areas. It defines the first – chronic primary pain – as that which has:

    no clear underlying cause, or pain (or its impact) that is out of proportion to any observable injury or disease.

    NICE also says it’s pain “that lasts for more than 3 months”. It has also included some conditions associated with chronic primary pain, including:

    fibromyalgia (chronic widespread pain), complex regional pain syndrome, chronic primary headache and orofacial pain, chronic primary visceral pain and chronic primary musculoskeletal pain.

    Conditions like fibromyalgia have no known cause (or patient’s pain is out of proportion), and therefore NICE considers them primary.

    It defines chronic secondary pain as that which:

    an underlying condition adequately accounts for the pain or its impact.

    Contention

    These two definitions are contentious. For example, the Faculty of Pain Medicine (FPM) noted that:

    The guidelines state chronic primary pain has no clear underlying condition and that the mechanisms underlying it are only partially understood. This does not mean that this [chronic primary pain] is a single entity [one thing causing it] and current understanding needs to develop to gain a better understanding of the underlying mechanisms.

    It continued:

    There is also a real risk that those classed as having “chronic primary pain” will include large numbers of people with a different, ultimately identifiable cause of pain, to whom this guidance should not apply.

    NICE’s updated guidelines for treatment have cemented the controversy.

    Pain meds: gone

    The guidelines have removed various options – namely the pharmaceutical ones. As the Pharmaceutical Journal wrote:

    The new NICE guidance… recommends against the initiation of opioids, paracetamol and non-steroidal anti-inflammatory drugs for those patients

    Opioids are controversial because of the possibility of patients becoming addicted to them. In the UK, the amount doctors have prescribed to patients has rocketed since 2006. Research by the University of Manchester found a:

    • Five-fold increase in codeine prescriptions from 484 prescriptions per 10,000 in 2006 to 2,456 per 10,000 in 2017.
    • 30-fold increase in oxycodone prescriptions from 5 per 10,000 in 2006 to 169 per 10,000 in 2017
    • Seven-fold increase in tramadol prescriptions from 101 per 10,000 in 2006 to 690 per 10,000 in 2017

    But currently, many patients have little other options to help manage their pain. For example, research by the Pharmaceutical Journal found NHS waiting times in 2019 for pain clinics ranged from 6 to 117 weeks.

    So, what are patients left with?

    “Barbaric”

    Claire Swain lives with chronic pain. She has launched a petition over the guidelines. You can read and sign it here. Swain told The Canary:

    Under the new guidelines, people like myself are only being offered anti-depressants, exercise, acupuncture and therapies such as Cognitive Behavioural Therapy (CBT) and Acceptance and Commitment Therapy (ACT) as chronic pain management because NICE no longer approves vital pain relief medications and treatments, even though these have been shown to work for many patients. These treatments are fine as part of a toolkit of options but as the only resource they are frankly barbaric.

    While the alternatives on offer may help some people with chronic pain, they will not provide the quality of life and ability to function normally that many gain from appropriate pain killers. When you are in such agony that all you can do is curl up into a ball, exercise is not really a realistic option. Neither are therapies such as CBT, ACT and acupuncture, which usually have very long waiting lists if they are available at all on the NHS.

    What’s more, the evidence for things like exercise therapy being used in conditions like fibromyalgia has been called “insufficient” by one renowned medical organisation.

    “Insufficient” evidence

    Healthcare professional Craig Elmer analysed NICE’s evidence base for aerobic (‘cardio’) exercise for The Canary. Some of it was cited by NICE as being in research charity Cochrane‘s review of aerobic exercise for fibromyalgia in 2017. This is where researchers for Cochrane pool together studies into this and put all the results together. When Elmer looked at Cochrane’s review, he found that some of the studies’ control group of patients (where ‘treatment as usual’ continued) were already receiving some form of pain relief. Ultimately, Elmer found that Cochrane had said:

    Evidence is insufficient to reveal the effectiveness of one aerobic exercise intervention compared with another, or of anaerobic exercise intervention compared with education, stress-management training, or medication, for adults with fibromyalgia.

    ‘Low quality evidence’

    Cochrane’s review also noted that:

    Aerobic exercise does not seem to improve fatigue. The quality of the evidence was considered to be low or moderate because of the small numbers of people included in the studies, some issues involving study design, and low certainty of results.

    Given that NICE includes fibromyalgia as one of the chronic primary pain conditions, it’s concerning that Cochrane’s review of the evidence (some of which was used by NICE) found that one of its recommended treatment’s evidence base was “insufficient”.

    NICE’s recommendations of exercise and psychological therapy have also been contentious in another chronic illness.

    ME: here we go again?
    One of the studies that NICE used as evidence was for graded exercise therapy (GET), although it is not named as such. Here, it made patients do walking and resistance circuit training, increasing them in increments. Another study did the same with aerobic exercise. 

    GET was NICE’s recommended treatment for the neuroimmune disease myalgic encephalomyelitis (ME). This was up until it changed its guidelines this year. NICE was effectively forced to remove GET because of the harm it caused patients. One study found that over 50% of ME patients who doctor’s prescribed GET to were harmed. Moreover, CBT has also been found to be ineffective. Given this, it is of concern that NICE would use GET as evidence on how to treat chronic pain – which, like ME, it defines as having no known cause.

    NICE: hiding the evidence?

    It also seems NICE is reluctant to fully explain its decision making processes behind changing its chronic pain guidelines. Swain sent Freedom of Information (FOI) requests to NICE in April. She told The Canary:

    We are asking for the unpublished data that was used in the decision making as we are unable to access it. In addition, many of the academic/medical journals that were used to make the decisions in the chronic pain guidelines require a huge cost to access them. Even my medical friends are unable to access them all through their work place.

    It took NICE until October to assign a caseworker to the FOIs. Then, it refused them. So Swain has gone to the Information Commissioner’s Office (ICO) to lodge a complaint. It stepped in and has forced NICE to make a submission to it by 17 December. This appears to be a systemic issue for NICE.

    Corruption and subversion?

    Because with the ME guidelines, some also did an FOI. NICE at first refused to release all the information the FOI asked for, about exactly what went on behind the scenes with its processes. So, the FOI requester had to ask NICE to do an internal review before it would publish everything. The FOI revealed, as The Canary reported:

    text messages and emails where individuals from not only the NHS but also supposedly prestigious Royal Colleges were trying to interfere and exert influence over decisions at the non-departmental, independent public body… (NICE). The revelations… paint a picture of attempted subversion of NICE procedures and potentially even corruption.

    One of the individuals lobbying NICE was from the Royal College of Physicians (RCP). It’s worth noting that the RCP was involved in developing NICE’s chronic pain guidelines – which, in terms of treatment options, have ended up being similar to what the RCP tried, but failed, to get NICE to implement for ME.

    Speaking out

    The Canary asked NICE for comment. It had not responded at the time of publication.

    Swain is not a lone voice in her objections to NICE’s new chronic pain guidelines. For example, the charity Pain Concern expressed similar sentiments to the FPM. It also said:

    As we feel the guidance is based upon crafted-together evidence rather than scientifically-strong evidence, then to remove much of the current toolbox seems to be poor timing in our view.

    So, Swain’s petition for parliament to debate the new guidance seems crucial. She told The Canary:

    My goal is to get 100,000 signatures so the petition will be debated in parliament. We want the government to consider the evidence and hear the statements of relevant stakeholders and campaign groups, including people with long-term pain issues.

    All we are asking is that parliament will take our views into account and convince NICE to reconsider its guidelines. We know that prescription pain killers and surgical interventions are not the answer for every chronic pain sufferer – we just want them to be included in the toolbox of treatment options available to us again.

    NICE: systemic problems?

    On first glance, it would seem bizarre to remove treatment options that if properly managed by a medical professional can help chronic pain. But delve deeper into the NICE guidelines, and it seems there are more factors at work here than meets the eye. It seems NICE has focused heavily on exercise and a psychological treatment path for chronic pain. This is exactly what certain medical professionals were pushing for it to do for ME. In that instance, they partly failed. But with chronic pain, it looks like they haven’t. The Canary will be looking into this further.

    For patients, NICE has now left them with very few options. Already their physical suffering is poorly understood. Now, NICE has advised doctors to essentially tell them to exercise and ‘think themselves better’ with CBT. This psychologisation of a physical problem will be all-too familiar to ME patients. But with a parliamentary petition now underway, hopefully Swain and everyone who has to live with debilitating pain day in, day out, can see some light at the end of the tunnel.

    Featured image via NICE – YouTube

    By Steve Topple

    This post was originally published on The Canary.

  • If you’re a disabled person the UN needs to hear from you

    As reported by The Canary in October, the UN is getting ready to investigate how the UK government treats chronically ill, deaf and disabled people. It comes five years after its last report which accused successive governments of “grave” and “systematic” violations of people’s human rights. Now, before the next report a disabled people’s organisation (DPO) wants to hear from people. And the evidence gathered will be given to the UN. But you only have until 5pm on 23 December to take part.

    The UNCRPD

    The UN Committee on the Rights of Persons with Disabilities (UNCRPD) is a human rights branch of the UN. It oversees the Convention on the Rights of Persons with Disabilities (CRPD). Many countries like the UK have signed up to it. The convention has a series of “articles” that the UNCRPD says countries should abide by to protect chronically ill, deaf and disabled people’s human rights. These are areas like accessibility, health, living independently and adequate standard of living and social protection.

    Every so often, the UNCRPD monitors countries to see if they are sticking to these articles or not. The last time the committee looked at the UK was in 2016. And the report was damning. It accused successive governments of “grave” and “systematic” violations of disabled people’s human rights. In August 2017, the UNCRPD followed up on its report; this included its chair accusing the government of creating a “human catastrophe” for disabled people. You can read The Canary‘s full analysis here.

    In 2018, the government effectively whitewashed the report. Now, the UNCRPD is getting ready to investigate it again. And chronically ill, deaf and disabled people need to have their say.

    Documenting people’s lives

    The Reclaiming Our Futures Alliance is a group of DPOs. It’s organising a shadow report to send to the UNCRPD documenting how well people think the UK government is sticking to the convention. As group member Inclusion London stated on its website:

    The Reclaiming Our Futures Alliance is working with partners in the DPO Forum, Disability Rights UK’s Our Voices and Disabled People Against Cuts to collect evidence and draft a shadow report for England. Disability Wales, Inclusion Scotland and Disability Action Northern Ireland are working on reports for their respective nations.

    Previously it made a call out for people to submit evidence – like research or reports. But now, one of the DPOs involved has launched a survey for chronically ill, deaf and disabled people.

    Getting your views

    Inclusion London says it has set up the survey:

    because we want YOUR views on how we should put together the different examples you have sent us.

    That is, it wants chronically ill, deaf and disabled people’s opinions on the best way to present its shadow report to the UN. Also, it asks questions like:

    In your view, since 2017 have things for Deaf and Disabled people overall:

    • Got better?
    • Stayed the same?
    • Got worse?

    It then also asks people to write an explanation of their answer. Then, there are a series of statements. It asks people to agree or disagree with them. All the questions have British Sign Language (BSL) videos to accompany them:

    A crucial year?

    So, with the UNCRPD preparing to investigate the government, and chronically ill, deaf and disabled people being actively involved – 2022 may be a crucial year in the lives of millions of people. But for this survey, you need to do it by 23 December. It’s vital as many people take part as possible. Because the broader range of evidence the UNCRPD has, the better.

    Featured image via YouTube screenshot – flagsoftheworld5 

    By Steve Topple

    This post was originally published on The Canary.

  • DWP staff’s office antics are the worst of the lot

    Department for Work and Pensions (DWP) staff have been exposed in the government’s Christmas parties scandal. And although the government claims they weren’t partying, the DWP’s actions are the most contemptible of them all. Because while they enjoyed themselves, the pandemic hit chronically ill people, disabled people, and people who rely on social security the hardest.

    DWP staff: boozing away but ‘they weren’t parties’

    The Sunday Mirror reported that DWP political staff and officials frequently drank alcohol after work until the early hours of the morning. They also ordered food to boss Thérèse Coffey’s office at the DWP. The Sunday Mirror said some of these evenings took place while hospitality and office parties were banned under coronavirus (Covid-19) regulations. On one occasion, Coffey also gave out presents to her team. A source told PA that desks in the office are socially distanced and there was “no party atmosphere going on”.

    This comes amidst the furore over the Tory government repeatedly breaking its own coronavirus rules – something Downing Street denies. The Mirror, its Sunday version and ITV News have made numerous allegations about parties in government offices while the government forced restrictions on the rest of us. Most recently, late on Saturday 11 December, the Sunday Mirror revealed Boris Johnson hosted a quiz as part of a government office ‘do’:

    The government has denied it broke any coronavirus rules. But it’s the DWP staff’s actions which are perhaps the worst of the lot. Because while they ate and drank late into the night, countless people who they make decisions for were suffering.

    A pandemic of chaos

    The pandemic put into sharp focus the state of the UK’s welfare system. For example:

    • The government did not increase so-called legacy benefits like Employment and Support Allowance (ESA) like it did Universal Credit. This affected around two million chronically ill and disabled people.
    • Chancellor Rishi Sunak’s autumn budget removed the Universal Credit £20-a-week uplift. This left millions of claimants worse off.
    • The DWP has already investigated twice as many claimant deaths in 2021 than in 2020; these are deaths where a claimant took their own life.

    But ultimately, perhaps the biggest scandal of the pandemic was that 58% of coronavirus deaths were disabled people. This shows an abject failure by the government to protect those who were clinically vulnerable from coronavirus. And all this was going on while DWP staff drank alcohol at work and shared takeaways.

    The DWP says…

    A DWP spokesperson told PA:

    Throughout the pandemic, DWP officials have followed Government guidance while continuing to deliver vital services for millions of people.

    Staff worked from home where possible but a core team working directly to the Secretary of State regularly worked from the office, in accordance with the Covid-19 rules as they evolved.

    The team regularly worked late into the evening and on a number of occasions they ate takeaway food and drank some alcohol. No karaoke took place.

    Because ‘no karaoke’ makes it all OK, apparently.

    Peak contempt

    For years, the DWP and its staff have treated claimants with contempt and disregard. This led to a report by the UN which accused successive governments and the DWP of “grave” and “systematic” violations of chronically ill and disabled people’s human rights. The chair of the UN committee who did the report said they had created a “human catastrophe”.

    It was only this week that Disability News Service (DNS) reported that the DWP has refused to publish a damning report. It found that despite years of reforms, the social security system was still failing to meet chronically ill and disabled people’s needs. And despite the report being “watered-down”, the DWP has failed to publish it.

    Nothing changes

    It seems that nothing changes in the DWP. Staff think it’s OK to booze while working. The fact they “drank some alcohol” and ate takeaways while countless claimants suffered sums up the contempt they have for the people they’re supposed to be working for: people who, for whatever reason, rely on them to deliver this country’s social security system. After so many chronically ill and disabled people died of coronavirus, the antics of DWP staff are perhaps the most twisted part of the whole government parties scandal.

    Featured image via the Oxford Union – YouTube and Wikimedia 

    By Steve Topple

    This post was originally published on The Canary.

  • Tories laugh during parliamentary debate about disabled people

    Tory MPs have been recorded groaning and laughing in parliament when a Labour MP was talking about disabled people. The Labour MP shared the video in which you can hear the Tories’ contempt on his Twitter – not that contempt from these people is anything new.

    DWP: ‘ignoring legacy benefit claimants’

    During the pandemic, the DWP increased Universal Credit by £20-a-week. But it did not do the same for people on so-called legacy benefits. These include social security like the Employment and Support Allowance (ESA). Disability rights activist Paula Peters previously told The Canary:

    the Tories completely overlooked and ignored legacy benefit claimants during the pandemic… Some were also shielding. Living costs rose and disabled people couldn’t afford the most basic standard of living. …

    We just want to live with dignity and respect.

    A court case

    Currently, claimants are waiting for a court decision on whether the DWP and government acted unlawfully by not also uplifting the social security payments for legacy benefits. As Disability News Service (DNS) reported, one of the claimants in the case, who is a disabled person, said of the situation:

    It’s like we don’t even exist. I just think it’s disgusting.

    It’s that feeling of erasing a minority group – sick and disabled people – from any help, from the public consciousness, and feeling like we don’t matter and don’t exist.

    That’s how it made me feel.

    Sadly, judging by the conduct of some Tory MPs in parliament recently, the claimant may well be right. Because on Tuesday 7 December, when a Labour MP raised the issue in parliament, the response from the Tory benches was contemptible.

    Laughing at you

    Former shadow justice secretary Richard Burgon asked a question of chancellor Rishi Sunak about the lack of an uplift. He said:

    Disabled people have been disproportionately attacked by Tory governments over the past decade… most recently through a cruel lack of support during Covid. Nearly two million disabled people were not given the £20 uplift in benefits

    Burgon then asked Sunak if he would backdate the uplift for legacy benefit claimants.

    In the background you can hear Tory MPs firstly groaning when Burgon starts his question. At around 45 seconds, someone actually laughs:

    Sunak’s response to Burgon was mealy-mouthed at best. He said, among other things, that the government was increasing spending on accessible toilets. That’s cold comfort to the 42% of people living in a family relying on disability social security who are in poverty and probably can’t afford ‘days out’.

    Contempt

    Tory contempt for chronically ill and disabled people is no surprise. As The Canary previously reported, Sunak made clear that the £20 Universal Credit uplift was just for ‘workers’ anyway. As we said at the time:

    In other words, the Tories think sick and disabled people don’t need extra money due to the pandemic.

    Yet the pandemic hit chronically ill and disabled people claiming social security hard. A report by the Disability Benefits Consortium found:

    • 82% of disabled claimants have had to spend more money than they normally would during the pandemic. …
    • two thirds (67%) of disabled claimants have had to go without essential items at some point during the pandemic.
    • almost half (44%) of disabled claimants are reporting being unable to meet financial commitments such as rent and household bills.

    The Tories have shown contempt for these people for many years. Now, the pandemic has further exposed it for all to see.

    Featured image via Parliament TV – screengrab

    By Steve Topple

    This post was originally published on The Canary.

  • An FOI reveals a rot at the heart of parts of the medical establishment

    A Freedom of Information (FOI) request has revealed the rot at the heart of parts of the medical establishment. It shows text messages and emails where individuals from not only the NHS but also supposedly prestigious Royal Colleges were trying to interfere and exert influence over decisions at the non-departmental, independent public body the National Institute for Health and Care Excellence (NICE). The revelations were uncovered by a chronically ill writer, and they paint a picture of attempted subversion of NICE procedures and potentially even corruption.

    NICE: a complex story

    As The Canary previously wrote, NICE has been at the centre of a storm over its myalgic encephalomyelitis (ME, sometimes called chronic fatigue syndrome, CFS) guidelines. It had not updated them since 2007. In short, NICE has been drawing up new treatment guidelines. But the process has proven contentious. This is because NICE planned to remove a treatment called graded exercise therapy (GET). It’s been shown to cause harm to ME patients. NICE was also shown to be downgrading the effectiveness of cognitive behavioural therapy (CBT) for ME patients. You can read the full background on GET and CBT here.

    NICE was due to publish the final version of the guidelines on 18 August, but it pulled them at the last minute. This was due to organisations like Royal Colleges and NHS England not agreeing with the new guidelines. So, NICE held a round table event with stakeholders on 18 October to try and reach an agreement. It then published the final guidelines on Friday 29 October. But some of the Royal Colleges still objected to the new guidelines. This is because there are parts of the medical profession which still believe GET and CBT should be used on ME patients.

    “External interference”

    At the time, it was clear that the Royal Colleges and NHS England were trying to stop NICE removing GET and CBT from its new guidelines. As former barrister and person living with ME Valerie Eliot Smith wrote about NICE pulling the 18 August publication:

    It became clear that this eleventh-hour development was the result of external interference by representatives of the Royal Colleges and NHS England who were opposed to the new guideline. This is in direct contravention to NICE’s own prescribed procedure and such an action at this late stage should have been impossible.

    Now, thanks to an FOI from an independent journalist and person living with ME – we know exactly what some members of the Royal Colleges and NHS England were telling NICE – via emails and text messages.

    The extent of the interference revealed

    Dom Salisbury is a scientific researcher and editor who lives with ME. He has been ill with the disease since at least 2016 and had to give up his chosen profession. Now, he writes on his own website. And recently, he has taken on the situation with the Royal Colleges and NHS England’s lobbying of NICE. Salisbury sent NICE an FOI. He asked it for all correspondence between it and “professional bodies or individuals (guideline stakeholders or otherwise)” that related to NICE’s decision to halt publication of the guideline. Salisbury asked NICE for this between 29 March and 17 August 2021. After a delay from NICE and Salisbury having to ask it to conduct an internal review, it finally released the documents to him.

    They document communications sent by people to NICE CEO Gillian Leng as well as its director of the centre for guidelines Paul Chrisp. Communications were sent to Leng and Chrisp by unnamed individuals from:

    • The Royal College of Psychiatrists (RcPscych).
    • NHS England/NHS Improvement.
    • The Royal College of Physicians (RCP)
    • The Department for Health and Social Care (DHSC).

    This shows the extent to which individuals in these organisation were concerned about NICE’s new guidelines. But it’s the detail contained in the FOI which really shows what can only be described as attempts by individuals to corrupt and/or derail NICE’s guidelines – and its impartiality on the issue.

    Damning revelations

    You can read Salisbury’s full analysis here, and the links to the documents NICE released are here. Some of the headlines from Salisbury’s analysis include:

    • Someone from NHS England/NHS Improvement texting Chrisp on 11 August, saying “the least worst option is to delay it or pull [the guidelines] altogether”.
    • A RCP member asking Chrisp on 13 August if there was “actually any chance that anything we might say could still change things at this stage”.

    One of the most damning parts is an individual from the RcPscych sending a lengthy text message to Leng. In it, they said [ED: from image below] that she should “hold back with the evidence” NICE based the guidelines on; that she should “over rule” (sic) the guideline committee, and called the new guidelines “opinion based”:

    A text message sent from an individual at the Royal College of Psychiatrists to the CEO of NICE

    NHS England: exerting power?

    Then, there’s an email from the same individual at NHS England/NHS Improvement. They said that they thought it was “extraordinary” NICE approved the guidelines; that the committee excluded trials (presumably relating to GET, the PACE trial) for “spurious” reasons, and that the resulting guideline was “fundamentally biased”. They also said the guidelines:

    Appallingly… tell patients… there is nothing to ‘cure’ ME

    NICE said this because so far there is no recognised cure for ME. Moreover, the person from NHS England/NHS Improvement goes on to say that they themselves have “no interests in the condition (ME/CFS)”, anyway. For someone who has no interest in the disease, they seem to have strong opinions on it – so far as peddling false information about a cure.

    Who says what?

    The Canary asked NICE for comment. A spokesperson said they “won’t be making any comment on this”.

    A RcPscych spokesperson told The Canary:

    The RcPscych… has 19,000 members worldwide. But only elected officers are entitled to speak on its behalf. As the person or persons who apparently made these comments are unnamed – the College is unable to comment.

    Us and other colleges have been open and consistent in expressing concerns regarding the evidence review and other aspects of the guidance. These concerns were expressed through official channels during the consultation, and can be found here.

    The Canary also asked the RCP for comment, along with NHS England and NHS Improvement. None of these organisations had responded, despite two requests, at the time of publication.

    A “small cabal”

    Salisbury told The Canary:

    I’m not shocked. There’s an almost tedious, comical predictability to the information revealed as it shows exactly the type of activism, lobbying, and influence the ME community has been up against for decades. As patients, we ask only for a level playing field; let (good) evidence speak for itself. Instead, we’re up against a small cabal of highly-placed individuals, including researchers and clinicians, who are concerned not with the guideline recommendations per se, but rather with protecting what’s left of their reputations and their disastrous trials, and with further embedding the overreach of psychology and psychiatry in the so-called ‘treatment’ and ‘care’ of patients with ME/CFS and other poorly-understood chronic conditions.

    I’m glad NICE made the right decision in the end, but I worry that this sort of interference may have influenced the outcome of guidelines for other conditions such as chronic pain and long-Covid.

    A sordid tale of attempted subversion and corruption?

    The revelations from Salisbury’s FOI cannot be described as anything but individuals trying to subvert the processes of a non-governmental, independent public body. You could say that this was potential corruption, given that the individuals concerned were specifically targeting the bosses of NICE’s guidelines committee.

    This level of interference and attempts at corrupting NICE procedures and processes is shocking. But moreover, it provides a snapshot into what goes on behind the scenes of supposedly independent public bodies. And it all begs the question: if this is the kind of behaviour from individuals that we now know about – what on Earth has gone on that we’re not privy to?

    Read Salisbury’s full analysis here.

    Featured image via Dom Salisbury and Edmond Wells – Flickr

    By Steve Topple

    This post was originally published on The Canary.

  • The government faces pressure over ‘harmful’ NHS treatments

    A new campaign aims to get the government to put mechanisms in place for reporting harms caused by controversial medical treatments. You’d be forgiven for thinking something like this already exists. Except that it doesn’t – at least not for non-pharmaceutical treatments like exercise therapy. So, the campaign wants to change things. And the implications of this could be far-reaching – not least for long Covid patients.

    The campaign founder’s specific area for the government to look at is the disease known as ME.

    Years of harm

    For years, myalgic encephalomyelitis (ME) patients have reported that non-pharmaceutical treatments have harmed them (some people refer to ME as chronic fatigue syndrome, CFS). This has often been from two treatments: graded exercise therapy (GET) and cognitive behavioural therapy (CBT). Recently, the National Institute for Health and Care Excellence (NICE) updated its treatment guidelines for ME. It removed GET as a recommended treatment. It said this was because:

    the committee considered the benefits and harms associated with graded exercise therapy that had been reported with ME/CFS across the quantitative and qualitative evidence, alongside their own experiences.

    NICE also downgraded the use of CBT. But some doctors groups were unhappy about NICE removing GET and downgrading CBT, and there’s concern that doctors will still offer exercise as a treatment.

    Now, Sally Callow who founded the not-for-profit ME Foggy Dog has decided enough is enough. She has launched a campaign to pressure the government to create a proper, centralised reporting system for patients to log harm caused by things like GET and CBT. And it’s already gaining traction.

    Nothing changing

    Callow told The Canary:

    Since the guideline was published by NICE in October 2021, it has been very clear to me that… the harm from these non-pharmaceutical ‘treatments’ wouldn’t stop.

    In the absence of adherence to NICE’s guideline, patients need a reporting system that is official and centralised so reports of harm can be collated and counted.

    For decades, patients have complained to their NHS Trust, GP practice… and sent anecdotal ‘evidence’ to ME/CFS charities, but the complaints have not lead to change. The harmful ‘treatments’ continue to be recommended to ME/CFS patients across the UK today.

    There is research evidence that backs up Callow’s assertion.

    Majority harm

    A 2011 paper by researcher and person with ME Tom Kindlon reviewed various studies into the use of GET and CBT for ME patients. It found that across various pieces of research, people’s physical and mental health worsened after both treatments. The extent of patients reporting worsening in health varied. One study found that 78.7% of people ‘deteriorated’ after a form of graded exercise. Another put the figure at 33.1% for GET and 27% for CBT. Overall, when Kindlon pooled all the research he included, the data showed:

    • GET (or similar) harmed 51.24% of 4,338 patients – with the range varying between 28.1-82%.
    • CBT harmed 19.91% of 1,808 patients – with the range varying between 7.1-38%.

    Kindlon concluded in his 2011 report that:

    It is hoped that this paper will lead to a greater focus on the reporting of harms in ME/CFS, not just those that might be associated with GET or CBT, but from any posited treatment. Interventions should not be presumed to be harmless when there exists evidence of potential harm and there have not been well-planned systematic methods to track and assess harms both within and outside trials.

    Sadly, ten years later little has changed.

    The NHS: ‘it’s up to the individual’

    One example is in the form of an email from late November Callow gave to The Canary. It’s from the assistant to the CEO of NHS England Amanda Pritchard. Callow asked how patients could report harm caused by ME treatments and also in the case of long Covid. The CEO’s assistant said:

    The NHS has a patient/public reporting route for patient safety incidents. However, given the therapy will depend to a large degree on the individual’s own situation and tolerance, it may not be appropriate to use this for CFS/ME. If a patient believes that a treatment they have received has not been effective or has had side effects, their normal first route to report this should be to the organisation that provided the treatment through the Patient Advice and Liaison Service (PALS). This should enable adjustment of the treatment. It also provides feedback to that organisation that may enable them to adjust the treatment they offer for other similar patients.

    “Not trying hard enough”

    Responding to that email, Callow told The Canary:

    Patients have been complaining to their NHS Trust… and PALS for decades. Treatments are not ‘adjusted’ for other similar patients. Clinics are resistant to negative feedback and insist that the patient simply is not trying hard enough or doing it correctly. With GET or any ‘therapy’ that involves increasing activity levels, patients do not experience ‘side-effects’ – many are left house or bedbound for months, years, or even decades. Patients tend to not want to return for more ‘treatment’ once their health has deteriorated to that degree of severity.

    In my opinion, the status quo allows the NHS (and ‘partners’) to mark their own homework with regards to ME/CFS, they have been giving themselves an undeserved A* for too long and too many patients have been harmed.

    So, it seems that change is sorely needed within the NHS. This is where Callow’s campaign comes in.

    Shake It Up

    She’s launched a campaign called Shake It Up. It began with Callow emailing the Medicines and Healthcare Products Regulatory Agency (MHRA). She said:

    I am writing to ask if you would consider creating a reporting mechanism for anything that is heralded as a ‘treatment’ or ‘cure’ by the NHS, in this particular case GET and CBT. A mechanism in which patients to log their name, address, the date, and healthcare professional/clinic that recommended these treatments as well as the effects of these ‘treatments’ – somewhere to scan appropriate paperwork if possible.

    Now, she’s broadened the campaign. There’s a petition people can sign. Callow also wants people to write to/email their MP to ask them to support the campaign. She says you can additionally contact lord Kamall, parliamentary under-secretary at the Department of Health and Social Care (DHSC). So, what would a harm reporting system look like?

    A “Yellow Card” scheme

    The MHRA currently has a “Yellow Card” scheme. This is for reporting harm from treatments which are pharmaceutical, like medicines, medical devices, and even e-cigarettes. As the MHRA states:

    The purpose of the scheme is to provide an early warning that the safety of a medicine or a medical device may require further investigation. It is important for people to report problems experienced with medicines or medical devices as these are used to identify issues which might not have been previously known about. The MHRA will review the issue and if necessary, take action to minimise risk and maximise benefit to the patients.

    Yet nothing exists for non-pharmaceutical treatments. Currently, if an ME patient is harmed by exercise therapy prescribed by a doctor, then all they can do is complain. This means there is no central database of everyone who has reportedly been harmed by the treatment. So, it’s this which Callow wants the MHRA and government to change.

    Not just ME

    This issue is not confined to ME. Callow told The Canary:

    ME/CFS patients are not alone in being harmed by non-pharmaceutical ‘treatments’, some of the petition signatures have come from other patient groups who have also experienced harm. This campaign is tackling the widespread false belief that non-pharmaceutical ‘treatments’ cannot, and do not, harm patients. This is simply not true.

    Long Covid is another example. As The Canary previously reported:

    medical professionals are still using exercise therapy in post-viral illness – namely post-and-long Covid. There are already clinics that are using this treatment – one using GET is funded directly by Public Health England.

    And it’s not just ME and long Covid where doctors use non-pharmaceutical treatments on patients. Fibromyalgia and the Ehlers-Danlos syndromes all have exercise therapy as an NHS recommended treatment. Medically unexplained symptoms (MUS) has CBT.

    A very economic problem?

    Callow thinks she knows why some of the medical establishment might be against a harms reporting mechanism. She told The Canary:

    I believe that much of the resistance to acknowledging non-pharmaceutical harms has origins in economics. Non-pharmaceutical often means cheap and cost-effective for medical organisations who would rather offer exercise and CBT to patients than invest in biomedical research that could lead to pharmaceutical treatments and possibly a cure.

    I’m hopeful that my Shake It Up campaign will lead to positive social change for a number of patient groups, including ME/CFS and long Covid, who are also offered GET and CBT despite many experiencing post-exertional malaise – the reason GET and CBT are not to be recommended for ME/CFS.

    So far, Callow’s petition has nearly 5,000 signatures. She’s also had a response from Kamall. Callow asked her MP Penny Mordaunt to contact Kamall to ask if the DHSC would implement the harm reporting system. But his response failed to even mention Callow’s question about harm reporting – effectively ignoring the issue:

    It seems unfathomable that there is currently no centralised mechanism to report harms from non-pharmaceutical treatments. Yet that is the reality. Despite the prevelance of exercise therapy, it does cause people harm. This is not just an ME problem either. Therefore, anyone affected by the issues raised in Callow’s campaign would do well to put their full-weight behind Shake It Up. Change is needed – and quickly.

    Featured image via Tumisu – Pixabay and ITV News – YouTube

    By Steve Topple

    This post was originally published on The Canary.

  • Disability Advocates Give Tepid Welcome to Build Back Better’s Home Care Funding

    A health care nurse helps a patient on June 30, 2021 in District Heights, Maryland.

    Disability and labor advocates cheered when President Joe Biden’s Build Back Better agenda passed in the House of Representatives last week. The American Association of People with Disabilities praised the $150 billion investment in home care as “historic,” noting it is “the single biggest investment in the program’s history.” But privately, advocates are worried that the investment won’t solve problems like long waiting lists for home care and low wages for those who provide it.

    The investment — less than half of what was originally promised, to be spent over 10 years — is unlikely to do much of what the Biden administration initially promised for home care, according to an internal memo circulated by advocates in July. During his presidential campaign, Biden pledged to clear waiting lists for home care and raise wages for workers. $150 billion, the memo said, may end up pitting workers, who are predominantly women of color, against disability advocates for access to limited funding. And because states also have to invest their own funds to get the federal matching amount, some may choose not to adopt the program at all.

    The home care industry has suffered from underfunding and neglect for decades. There are years-long waiting lists for people with disabilities and seniors to receive necessary care. Workers are poorly compensated, averaging $12 an hour. The work is emotionally and physically intense. Workers are responsible for maintaining their clients’ health and assisting them in their basic needs, like eating or showering. Two-thirds of home care workers quit within a year, according to Home Care Pulse, a market research firm.

    Some advocates worry that a fight over what gets funded — more capacity for those who need home care or better wages for those who provide it — will fracture a relatively new peace between labor unions and disability advocates. For years, labor unions were some of the staunchest opponents of closing asylums and segregated state schools for people with developmental disabilities. Some still are: The American Federation of State, County and Municipal Employees, the largest union of public employees in the United States, has described deinstitutionalization as “yet another way to push the responsibility for service and funding into the private sector.”

    In contrast, disability groups unequivocally celebrate deinstitutionalization as a victory for human and civil rights. As unions including the Service Employees International Union have expanded their efforts to organize home care workers, national labor organizations have largely backed off fighting deinstitutionalization. But a fight over limited funding could damage this relatively new alliance. Ai-jen Poo, the executive director of the National Domestic Workers Alliance, warned of this potential outcome in the July memo. “A marked reduction in funding will not allow for the effective implementation of this policy, if states elect to participate at all, and will create grave tension within the broad-based coalition that supports this effort,” the memo reads.

    Poo did not respond to a request for comment through communications staff.

    The problem lies in the structure of Medicaid’s home care funding program, according to the memo. The federal government provides some funding, but states must opt in and contribute their own funding. Unlike the federal government, states cannot borrow money. If state legislatures need to cut costs, optional Medicaid programs are often first on the chopping block, according to an issue brief from the Kaiser Family Foundation. Multiple experts told The 19th that states with lower tax income per capita, such as Georgia or Alabama, are more likely to opt out of expensive optional programs.

    Still, advocates for home care are relieved to have had their priorities included at all; a number of proposals didn’t make it into the version passed by the House. The prevailing sentiment among policy experts in D.C. was that some money is better than none.

    This was shared by home care workers themselves. TunDe Hector, a certified nursing assistant from Georgia and member of SEIU, praised Biden’s Build Back Better agenda, even with the cuts.

    “I think President Biden is doing a good job. He’s doing the best he can right now. Given the political climate, it’s very hard for him. This is his vision — of building back America and building it back better,” Hector told The 19th.

    Hector stressed the importance of home care workers.

    “Home care is the backbone. You need people who take care of people. We feed, bathe, brush teeth,” Hector said.

    Josue Rodriguez, an Texas organizer for disability rights protest group ADAPT, praised the funding. Rodriguez has cerebral palsy and uses home care services himself. Last month, he attended a vigil in D.C. last month to push for home care funding.

    “It’s a good starting point to relieve some of the issues that we’ve got,” Rodriguez said. “It’s not enough. But it’s a good starting point.”

    This post was originally published on Latest – Truthout.

  • York council has discriminated against 7,500 disabled people

    York council has caused anger, upset, and uproar over its decision to ban sick and disabled people from parking in the city centre. The council claims it’s due to anti-terrorism measures. A campaign group, meanwhile, has branded the move a threat to people’s “human rights, independence and dignity”.

    York: banning vehicles…

    During the coronavirus (Covid-19) pandemic in summer 2020, York city council stopped people parking and driving into the area around York Minister. The ban included sick and disabled people with Blue Badges, and it was due to social distancing needs. It was in an area called the “footstreets” – York’s pedestrianised part. Now, the council has voted to make the ban public. This time, the reason is terrorism.

    As York Press reported, police superintendent Mark Khan said:

    It’s not so much if a terrorist attack happens but when. It is reasonably foreseeable to see someone coming to York, if there wasn’t any hostile vehicle mitigation, at something like the Christmas market and driving that vehicle to kill as many people as possible.

    The Lib Dem and Green Party-run council obviously listened to voices such as Khan’s. Because on 18 November, it voted to keep the vehicle ban in place.

    … permanently

    As York Disability Rights Forum tweeted:

    The council’s decision will impact around 7,500 sick and disabled people in York who have Blue Badges. As York Press wrote, the Labour Party objected. Its MP for York Central Rachael Maskell tweeted she was “sickened” by the decision:

    The council, as York Press noted:

    voted to put in place a series of mitigation measures, including dropped kerbs, the employment of an access officer and a feasibility study into an accessible shuttle service.

    A spokesperson told the Guardian:

    The council has a duty to protect the lives of residents and visitors, but we know that doing so as effectively as the police advise will have a significant impact on some blue badge holders.

    A disabled Liberal Democrat described themselves as being “distraught”.

    Sick and disabled people: second class citizens?

    Amy Fortnam said on Twitter she had quit the Lib Dems over the move:

    Another user pointed out that York council was effectively stopping sick and disabled people going where non-disabled people can go. And some Green Party members were angry with the decision too.

    The council reportedly also ignored a report by a human rights advisor saying that the plan “risked being significantly discriminatory”. So, as York Disability Rights Forum tweeted, it’s not like the council didn’t know the impact its decision would have on sick and disabled people:

    Another group, York Accessibility Action, said there’s “no suitable parking” for sick and disabled people within 150 metres of the city centre. So the group is planning legal action against the council.

    A twisted irony

    Its crowdfunder has already raised over £5,000. York Accessibility Action said:

    All attempts at communication and constructive consultation with the Council have met with no positive outcome and have failed to provide practical and meaningful alternatives to the ability to park close enough to the city centre.

    We believe the City of York Council is disregarding the Equality Act 2010 and the human rights of disabled residents and visitors.

    You can get involved online using #ClosedToUs.

    The twisted irony of York city council making this decision at the start of Disability History Month probably isn’t lost on many sick and disabled people. Now, York’s sick and disabled people, and their advocates and supporters, will have to wait and see if the threat of legal action will make the council back down.

    Featured image via York Accessibility Action

    By Steve Topple

    This post was originally published on The Canary.

  • The DWP just faced a protest outside the High Court

    The Department for Work and Pensions (DWP) was in court on Wednesday 17 November. It was over its failure to support chronically ill and disabled claimants during the coronavirus (Covid-19) pandemic. But campaign groups ensured that the case against the DWP did not go unnoticed.

    DWP: ‘ignoring legacy benefit claimants’

    During the pandemic, the DWP increased Universal Credit by £20-a-week. But it did not do the same for people on so-called legacy benefits. This included social security like Employment and Support Allowance (ESA). Disability rights activist Paula Peters previously told The Canary:

    the Tories completely overlooked and ignored legacy benefit claimants during the pandemic. Many of these 2.2 million claimants are disabled people. Some were also shielding. Living costs rose and disabled people couldn’t afford the most basic standard of living…

    We just want to live with dignity and respect.

    But the DWP wasn’t going to get away with this that easily.

    A court case, delayed

    As The Canary previously reported, two disabled people are using legal aid to mount a judicial review. This is over the DWP’s failure to uplift legacy benefits in line with Universal Credit and Working Tax Credits. Firm Osbornes Law is representing them, and it’s looking at the government’s decision not to give an uplift to ESA. The case will argue that this is discrimination under the European Convention on Human Rights, because the claimants are disabled people.

    So far, things have gone far from smoothly. Because of a shortage of judges and a backlog of cases, the High Court pushed the claimants’ judicial review hearing back from the end of September to 17 and 18 November. Then, at the last minute, the court changed the date of the second day to 19 November.

    The case is important, because it could affect millions of claimants. As the Mirror reported, people could be entitled to up to £1,500 in payments if the DWP loses the case. So, campaign groups and politicians were outside the High Court on 17 November in solidarity with everyone affected.

    A High Court vigil

    Groups like Disabled People Against Cuts (DPAC) and Unite Community attended:

    Charities like the MS Society were also there:

    Labour MPs John McDonnell, Debbie Abrahams, Marsha de Cordova and SNP MPs Marion Fellows and David Linden were also present:

    It’s unlikely the outcome of the case will be known by 19 November. But either way, the strength of feeling among some campaign groups and MPs is clear. The DWP would do well to listen.

    If you have a case relating to social security or housing, Osbornes Law may be able to help. Find out more here. 

    Featured image via Paula Peters 

    By Steve Topple

    This post was originally published on The Canary.

  • Death of Disability Advocate Puts Spotlight on Systemic Ableism in Air Travel

    A disability rights advocate, Engracia Figueroa, died after United Airlines allegedly damaged, and refused for months to replace, her wheelchair, which was built specifically to accommodate her disability.

    United Airlines has made headlines in recent years for being, to say the least, rather unfriendly to its customers. In 2017, the company infamously used physical force to remove a passenger from a plane after it had been overbooked, injuring the man in the process. A few months later, the company got into hot water for the death of a giant rabbit named Simon; by 2018, it was also in trouble because a flight attendant forced a passenger to put her pet dog in an overhead storage big, where it died. The company has even been the target of a protest song, “United Breaks Guitars,” by an artist who claims the company destroyed his musical instrument.

    The corporation may be an easy target for jokes about its customer service crises. Yet the recent death of a disability rights activist spurred by the airlines’ alleged destruction of her wheelchair speaks to a deeper systemic ableism in our society — an issue not merely confined to one airline.

    Engracia Figueroa, a disability rights advocate at Hand in Hand: The Domestic Employers Network, died on Oct. 31 at the age of 51, months after United Airlines workers accidentally damaged her specialized wheelchair. According to Hand in Hand, the destruction of Figueroa’s wheelchair in July was far, far more than an inconvenience. The device was built specifically to accommodate Figueroa’s disability, caused by a spinal injury and leg amputation, and it was hazardous for her to spend too much time without it. The five-hour wait at the airport (during which she learned her chair had been destroyed) led to an acutely painful pressure sore for which she had to be hospitalized. Making matters worse, the company at first refused to replace Figueroa’s chair in accordance with the Airline Carriers Access Act, which requires airlines to replace damaged or misplaced assistive devices. Because Figueroa’s chair was motorized, it could have been unsafe or presented a fire hazard if she used it while damaged, and her body required something more specialized than the standard wheelchair they offered her.

    Sadly, by the time United finally agreed to get Figueroa an adequate replacement chair, “the months in which they [United] fought against the replacement took a toll on her body,” according to Hand in Hand. “While fighting with United to replace her chair, Engracia was forced to use a loaner chair that was not properly fitted to Engracia’s body.” This exacerbated her pressure sore and led to an infection that spread to her hip bone, eventually leading to her death. (Salon reached out to Hand in Hand and United Airlines for comment on this story; neither replied, although Hand in Hand has been outspoken in supporting Figueroa and United has publicly offered condolences to Figueroa’s family through a statement to The Independent.)

    In a number of interviews before she died, Figueroa explained that when airlines damage or destroy mobility devices, they ruin lives. “Mobility devices are an extension of our bodies. When they are damaged or destroyed, we become re-disabled,” Figueroa put it, according to Hand in Hand. “Until the airlines learn how to treat our devices with the care and respect they deserve, flying remains inaccessible.”

    Her words mirror a 2016 report on flying with disabilities published in the journal Travel and Tourism Research Association. Based on an analysis of three major Australian domestic airlines, the scholars concluded that “the ‘essence of experience’” for disabled passengers involved “a newly disembodied experience that transformed a person’s impairment into socially constructed disability. The social construction was a product of international air regulations, airline procedures, pressures brought about by the introduction of low-cost airlines into Australia and a new wave of occupational health and safety considerations.”

    They also could have come from this 2009 study in the Journal of Travel Research: “The findings suggest that participants are confronted with physical and social difficulties, which, for wheelchair users, result in humiliation and physical suffering. Moreover, crew members’ behavior toward people with disabilities indicates the need to train and educate airline employees.”

    Experts who spoke toi confirm that these descriptions, through written years ago, are still accurate. Public Policy Analyst Claire Stanley at the National Disability Rights Network, for example, used the expression “gate to gate” when describing the mere breadth of adverse experiences that a disabled individual may encounter while attempting to use commercial airlines.

    “There have been a lot of unfortunate scenarios involving poor treatment of people with disabilities,” Stanley explained. She described how disabled people whose medical devices set off security metal detectors, are fragile or are potentially embarrassing will complain that they were treated poorly by security as they went through the process of preparing for their flight. People with service dogs say they often encounter employees who do not know how to properly work with them, as do those with colostomy bags. (Obviously, the problems encountered in these two scenarios are quite different.)

    “Going through security for the whole spectrum of disabilities, there is just a lack of training and a lack of respect for doing it with dignity and in a timely manner,” Stanley told Salon. “I’ve heard people with disabilities say they have to go to the airport hours and hours early to get through TSA because if they don’t, they’re never going to make it to their plane on time.” Even after one passes through security, the ordeal of getting on the flight does not necessarily end. Being able to easily move one’s body to the vehicle itself is an ableist privilege, not a universal ability.

    “When I say ‘gate to gate,’ you go to the ticket counter to check in and then you get escorted through the airport to your gate,” Stanley observed, adding that this is not always doable for people with disabilities. “The two big groups you hear are people with physical disabilities who need to be pushed through the airport to get to their gate or those of us who are blind or visually impaired getting escorted through the airport to our gates.” Very often, the people who are supposed to do those jobs simply do not know how to do them well.

    Once a passenger is on an airplane, their struggles may continue. Even if they do not need to worry about crew members destroying necessary life-sustaining equipment, they have to be concerned about their experience on the vehicle itself. This is where the ordeals of people who use wheelchairs become particularly conspicuous; a report in June found that airlines have lost or damaged more than 15,000 wheelchairs since late 2018.

    “In October 2019, a [Paralyzed Veterans of America] member was hand-carried off of an airplane,” Heather Ansley, the Associate Executive Director of Government Relations at Paralyzed Veterans of America (PVA), told Salon by email. “Although there was no emergency requiring it, she was informed that allowing individuals to carry her off was the only way for her to deplane. She reluctantly agreed even though she expressed her discomfort with the process. While she was being carried from the aircraft, she was afraid that they would drop her and could feel the struggle of those attempting to assist her.”

    This was not the only adverse flight experience that a PVA member reported. Ansley described a PVA member who had to use the arms of other seats to move himself to the front of the plane after no aisle chair appeared to transport him from his seat to the wheelchair waiting for him in the jet bridge. Another reported being allowed to fall to the floor by aircraft personnel who were talking while he was being removed from the plane. One PVA leader was “severely injured” after being dropped while getting transferred to an aisle chair so he could board; the error fractured his tail bone, eventually leading to skin breakdown and a bone infection.

    “In general, commercial airplanes are required to meet almost no meaningful access standards for people with disabilities,” Ansley explained. In addition to issues with storing wheelchairs, the inside of the plane itself can be fraught with awkwardness and even peril.

    “The interior of the airplane is hostile for those who must board using aisle chairs as the aisle is narrow and many people report banging into armrests as they are dragged to their seat,” Ansley wrote to Salon. “Once on the plane, lavatories are not accessible on the vast majority of single-aisle aircraft, which means that people with disabilities who have mobility disabilities or need assistance in the restroom are not able to use the bathroom on those planes. Thus, they must dehydrate and fast to minimize the chance of an accident.”

    Even before a disabled passenger arrives at the airport, they may encounter unfair difficulties because of their disability. A 2010 report in the journal Government Information Quarterly tested whether airlines comply with Department of Transportation regulations stating that companies cannot charge a purchasing fee for buying a ticket over the phone if the customer is a disabled individual who cannot use the website. Despite this rule, two of the airlines — USAirways and United — practiced discriminatory pricing in more than one-third of the phone calls, even after they were told that they were not supposed to do that. The problem, it appears, goes beyond “gate to gate.” It is a structural flaw in how our transportation infrastructure perceives — or, perhaps more accurately, fails to perceives — people who are differently abled.

    “I have yet to see a mode of transportation that is designed for all users ([especially] disabled travelers) at the outset,” Carol Tyson, Government Affairs Liaison, Disability Rights Education & Defense Fund (DREDF), told Salon by email. “Disability activists and advocates have had to fight for every gain — literally laying bodies and lives on the line to get lifts on public buses in the 70’s and 80’s.” Tyson added that if a mode of transportation is not disability-friendly, “we are stuck with them for years (if not decades), and it becomes more costly and sometimes less safe to retrofit.”

    The particular tragedy, at least in the case of wheelchair accessibility, is that American leaders have personally known for year how important it is for aircraft to accommodate that type of device. President Franklin D. Roosevelt, himself a paraplegic, used a special elevator nicknamed the “Sacred Cow” to embark and leave his plane without inconvenience. The machine was a marvel of engineering in the mid-20th century. The fact that it did not foreshadow an era in which disabled passengers could have the same experience as non-disabled ones speaks less to a lack of technology, and more to deep structural problems and systemic biases in how our transportation infrastructure is developed.

    A spokesperson for the Transportation Department told Salon in a statement, “This account is heartbreaking and adds urgency to the work that we and others in this industry are trying to do to make aviation more accessible.”

    This post was originally published on Latest – Truthout.

  • The NDIS is letting women with disabilities down

    You’d think that the National Disability Insurance (NDIS) scheme would be equally as accessible to men and women. But our new research suggests this isn’t the case.

    Only 37% of participants in the NDIS are women and girls, even though they make up about half of people with disability under 65. There was also some evidence (p. 49) from early in the NDIS roll-out that women were more likely to have unmet support demands than men (e.g. they were funded for supports that they then couldn’t access).

    So, women are underrepresented in the NDIS and may also be less likely to get the supports they need once they are on the scheme.

    For example, Deaf Aboriginal woman Nellie told us:

    I’ve also experienced a lot of gender issues with the NDIS. I’ve never had one woman contact me, ever. They’ve all been men, and I’m not completely comfortable with that. I mean it’s fine, but if you had a white hearing man, then the power is there, and they don’t understand disability on top of that, I feel very uneasy and passive and it’s a little bit like they become the aggressor and I retreat.

    Nellie’s experience – and many of the other women we spoke to – is consistent with international evidence that women with disability tend to be a particularly marginalised group when it comes to health and social care.

    According to the NDIS, female underrepresentation is due to the scheme supporting a lot of younger people with autism, developmental delay and intellectual disability – and those things are most likely to be diagnosed in men and boys. But that only covers who gets onto the scheme, not what their experiences are like once they have been accepted.

    Women’s disability advocacy agencies have been concerned for some time about gender equality in the National Disability Insurance Scheme (NDIS). But we couldn’t find any academic research about gender and the NDIS, so we interviewed 30 women from the ACT and Victoria, with a range of ages and disabilities, about their experiences with the NDIS.

    Our study

    Most were on the scheme already, but some were applying or had thought about applying. All the names in this article are pseudonyms.

    We found that some women had a great experience on the NDIS, or felt that the good significantly outweighed the negative. When it works, the NDIS can be truly transformative.

    However, many women had experienced significant difficulties in applying for the NDIS, interacting with the NDIS, or using their plans once they were on the scheme.

    Others had thought about applying but were too discouraged from what they had heard about other people’s experiences.

    Gendered barriers to the NDIS

    There were lots of barriers that women talked about, including the burden of NDIS administrative processes and how difficult it can be to learn how the scheme works, but we have just published an article exploring some of the most gendered barriers.

    Firstly, dealing with the NDIS can be difficult for people – especially for women – because as a personalised funding scheme it requires participants to know what their needs are and to articulate them and advocate for them on an individual basis. But from what we heard, the system is not very flexible in accounting for participants’ varying experience of self-advocacy and service navigation.

    We know that getting the right services on the NDIS requires a lot of individual effort because women used words like ‘push’, ‘fight’, ‘battle’, ‘struggle’ to talk about their experiences. Marjorie said that “everything I’ve gotten from the NDIS I have had to push for”. While some felt confident to self-advocate (Daphne said she had “more front than Myer”), more than half the women mentioned difficulties with self-advocacy, said they didn’t feel disabled enough to be on the scheme, or felt it was more important to put others before themselves.

    This is gendered because women are socialised or expected to be more selfless than men, to be the care providers, and can be penalised more than men for speaking up for themselves. For example, Peta told us: “I just think like being a woman …just this idea that you just kind of have to accept to some degree, you just have to put up with it. You know, you’re conditioned to care and just put up with shit that comes along or to not speak up if someone offends you.”

    Some women also felt that NDIS system actors (such as planners or disability service providers) react differently when men with disability self-advocate – for example being more likely to give men what they want, or being more intimidated by male anger, or more likely to label women who self-advocate as stubborn and difficult.

    Several participants felt that self-advocacy was compromised by caring roles. Dianne was particularly concerned about this in the context of women with disability caring for children with disability: “I know of cases where women have been advocating for a child with a disability or an adult child with a disability, and they’ve had to fight all those battles, and then they’re literally too exhausted to fight their own NDIS battle. And if like me, if they’ve hit a brick wall at some point with what they’ve asked for, they’ve just gone oh, I can’t do this. So they’ll actually go without, rather than continue trying to advocate for themselves.”

    Other difficulties with caring responsibilities included feeling like the NDIS did not recognise and support their mothering roles, that it tried to keep their disability needs separate from those of their children (which did not work in practice), or that it did not recognise caring responsibilities for extended family members.

    For example, Melissa said, “My motherhood gets completely thrown out the window”. Nellie, who is an Aboriginal elder, had significant caring responsibilities for her extended family and community, but had not been given support to carry out these responsibilities. She told us:

    “I don’t believe that the NDIS themselves really have any sort of clue of what it means when you’re talking about the Aboriginal context and you’re talking about women within the Aboriginal context.”

    Lastly, some women talked about the types of diagnoses that men and women are more likely to have, and the fact that it’s easier to get NDIS support for male-dominated disabilities than female-dominated. As January (who had ME/CFS) described it: “The things that women are more likely to be diagnosed with, which are overwhelmingly autoimmune conditions, chronic illness-based conditions, these are the things the NDIS spends a really enormous amount of energy trying to convince you that you can’t use NDIS for.”

    There is also a growing evidence base that autism is diagnosed more in males for gendered reasons, and not because the condition genuinely occurs in three times more men and boys than women and girls. So, there are likely to be many girls with autism that are missing out on the support they need because it is harder to get a diagnosis.

    What action is needed

    We were only able to scratch the surface in our exploratory study, but from talking to these women about their experiences, we think that the NDIS should do more to support women and girls to participate fully in the scheme.

    Advocacy groups have been recommending an NDIS Gender Strategy for years. We also think there needs to be better integration between the NDIS and existing women’s services – for example, building a system interface between the NDIS and critical women’s services such as specialist domestic and family violence services, sexual and reproductive health services, and parenting and carer support services.

    And women’s disability advocacy organisations need to be better resourced to create information pathways and peer networks to support women in getting more fair treatment in the NDIS, as well as to help the NDIS improve at a systemic level.

    Please note: The feature photo is a stock image. 

     

     

     

     

    The post The NDIS is letting women with disabilities down appeared first on BroadAgenda.

    This post was originally published on BroadAgenda.

  • Singapore: indefinite stay of execution for man with learning disabilities after he gets Covid

    Nagaenthran K Dharmalingam, who has an IQ of 69, has been on death row since 2010

    A man with learning disabilities who is facing the death penalty in Singapore for smuggling a small amount of heroin has had his appeal adjourned and been given an indefinite stay of execution after testing positive for Covid.

    Nagaenthran K Dharmalingam, a Malaysian man arrested in April 2009 when he was 21 for attempting to smuggle 43 grams of heroin into Singapore, has been on death row since 2010. His execution had been scheduled for Wednesday.

    Continue reading…

    This post was originally published on Human rights | The Guardian.

  • NICE’s new ME guidelines won’t stop the whitewash of the disease

    The National Institute for Health and Care Excellence (NICE) has published new guidelines for the treatment of myalgic encephalomyelitis (ME). It comes after delay, controversy, and decades of harm for people living with this debilitating disease. But while the new guidelines have some changes, the flaws in both them and in medical care in the UK, still undermine any good that is to be found in NICE’s new treatment recommendations – leaving them as a whitewash of systemic problems.

    NICE and the ME guidelines

    As I previously wrote, NICE has been at the centre of a storm over its ME guidelines. It had not updated them since 2007. In short, NICE has been drawing up new treatment guidelines. But the process has proven contentious. This is because NICE planned to remove a treatment called graded exercise therapy (GET). It’s been shown to cause harm to ME patients. NICE was also shown to be downgrading the effectiveness of cognitive behavioural therapy (CBT) for ME patients. You can read the full background on GET and CBT here.

    NICE was due to publish the final version of the guidelines on 18 August. But it pulled them at the last minute. This was due to organisations like Royal Colleges and NHS England not agreeing with the new guidelines. So, NICE held a round table event with stakeholders on 18 October to try and reach an agreement. The minutes of the meeting and accompanying information is telling. Analysis by Dr Keith Geraghty shows some medical professionals trying to undermine NICE’s decision making process on GET.

    As barrister and ME patient Valerie Eliot Smith wrote:

    It seems that there were some cracks in NICE’s round table which are now becoming apparent. The optimism expressed in NICE’s news release may have been premature.

    NICE published the final guidelines on Friday 29 October. In short, the now-published guidelines are almost the same as the leaked ones which I wrote about here – which are slightly different again from November 2020’s draft, which I wrote about here. The headline is that NICE has removed GET and downgraded CBT.

    But none of this is by any means perfect.

    Push-back from the Royal Colleges

    The NICE guidelines have already had pushback from clinicians supportive of exercise therapy and CBT. This is what Eliot Smith referred to as the “cracks” in the round table. A prime example is a joint statement by various Royal Colleges on the guidelines – including those of physicians, psychiatrists, and GPs. It said the new guidelines:

    understate the importance of activity and exercise in the management of ME/CFS and the connection between people’s mental and physical health.

    The statement also defended CBT and kicked-back against NICE’s downgrading of it. It went on to say that GET:

    as defined in the guidance is not reflective of the personalised paced exercise programmes that are currently used in the NHS and termed GET. These have provided benefit to many patients and should not be discontinued. However, we recognise that the phrase GET is unhelpful and this terminology should be dropped to allow clinicians to work with their patients in a more productive way.

    This immediately shows that despite NICE’s efforts, some Royal Colleges won’t accept the guideline changes. After all, changing what something is called is not going to change the harmful impact it is having on patients. And by NICE’s own admission, doctors do not have to follow the guidelines. It stated that:

    NICE guidelines are not binding. They inform the judgement of bodies providing NHS services and their clinicians, nothing more.

    You’d be forgiven for thinking ‘what’s the point of the guidelines if doctors won’t have to follow them’. Already some medical professionals are re-wording GET to ‘graded activity management’ (GAM) or similar: NHS services in Bedfordshire and Salford are two examples of this. And it fits perfectly with the Royal Colleges’ claims about GET not really being GET when they’re using it, which appears to be a nonsense. Some private physiotherapists are also still advertising it.

    Plus, one doctor highlighted another potential issue from the medical profession.

    Leaving ‘loopholes’ in the medical landscape

    ME doctor Nigel Speight wrote on Facebook that some medical professionals who believe in a psychiatric/biopsychosocial approach to ME:

    will a) hang on to the loophole left for CBT b) carry on GET but call it “Graded Activity Management c) deny many patients a diagnosis of ME by calling them FND (Functional Neurological disorder) PP (Perplexing presentations) and MUS (Medically Unexplained Symptoms). Children will still be called FII (Fabricated and Induced Illness) and severe cases will be referred to psychiatry as Pervasive Refusal syndrome. It is our job to prevent all of this.

    In other words, doctors will diagnose people with conditions and tell them the alleged cause and treatment is often psychological to maintain this status quo.

    The Wessely school of thought?

    Then, NICE has placed much of the emphasis on patients steering the direction of their treatment. Overall, it states that ME can be “self-managed”. For example, on energy management, NICE advises medical professionals to tell people with ME that it:

    is a self-management strategy led by the person themselves with support from a healthcare professional in an ME/CFS specialist team

    NICE says the same for CBT’s role and also for flare-ups of symptoms.

    This self-management approach is straight out of the playbook of Simon Wessely – a psychiatrist involved in, and a proponent of, GET and CBT and the biopsychosocial (BPS) model of treatment.

    Downplaying ME

    Wessely carried out a review of the Mental Health Act for the government. In it, he pushed the emphasis on the patient leading what treatment they had; ‘self-management’ if you like. This seems good on paper. But in reality, it could leave patients vulnerable. Because if treatments don’t work, then the blame for this can be pushed onto the patient for ‘not trying hard enough’. This absolves medical professionals, and ultimately the system, of responsibility. As Tanmoy Goswami wrote for the Correspondent:

    British cultural theorist Mark Fisher, who died by suicide after a lifelong fight against depression, explained that the hijacking of self-care is the logical outcome of capitalism, where the complete burden of your wellbeing is shunted on to you – because hey, hasn’t the free market given you access to everything you’ll ever need? If you still don’t manage to feel better, the fault must be within you.

    This scenario leaves ME patients with even less treatment options in the long run. Also, as one Twitter user and ME patient summed up:

    As long as the phrase “management of symptoms” is used re [ME], the public, media, and medical profession will continue to see it as a sort of minor inconvenience… which we can live/manage [with]. We need treatment and cure. Enough with “managing”. M.E. kills

    Moreover, the patient self-managing their treatment requires good access to medical professionals in the first place. NICE says all of this has to be through an ME specialist clinic or physiotherapist with knowledge of the disease.  As I previously wrote, specialist ME clinics are a postcode lottery. The ME Association has a list of them all. Some have closed. Many are led by psychologists. So, the NICE guidelines do not fully marry with the reality of medical provision at all.

    More issues

    Then you have the corporate media’s negative and often biased coverage of ME. PR firm the Science Media Centre (SMC) sometimes “seeds” (plants) stories in the media. These are often negative about patient-activists. They also prop-up the psychiatric approach to treatment. For example, the Telegraph has published two articles recently by Dr Michael Fitzpatrick. It allowed him to push that GET wasn’t harmful and that patients who were against it were “activists” and “militants”. Fitzpatrick is a long-time associate of Claire Fox – whose sister Fiona is the CEO of the SMC.

    Meanwhile, medical professionals are still using exercise therapy in post-viral illness – namely post-and-long Covid. There are already clinics that are using this treatment – one using GET is funded directly by Public Health England. Moreover, many doctors still have limited knowledge about ME – with one survey finding nearly 40% of GPs thought the disease was psychosomatic.

    All these things I’ve mentioned combined means that ME will still be viewed as something partly psychosomatic and stall any breakthroughs in the disease. While the ‘think yourself better’ lobby is still dominant, the future of research, treatment and a cure looks bleak.

    But ultimately, it’s patients that bear the brunt of this chaos and malice while it unfolds.

    Back in the real world

    I cannot stress enough that me, my partner, ME patient-activists, and their advocates are not the majority here. We know what’s gone on with GET, CBT, the PACE trial, and the NICE guidelines. But we are a small minority.

    The majority of people with or who get an ME diagnosis will not have our insight. They will go to their GP, and their GP will tell them to do ‘flexible’ exercise: at first doing less than they currently do and gradually increasing it. Then, human nature will kick in. If a medical professional tells you that a form of therapy may make you feel better (even if you are supposed to do it gently and flexibly), what will your reaction be? If you’re severely unwell and desperate to get better, you’ll try as hard as you can to do this – maybe exceeding what a doctor has advised you to do and making yourself worse in the long run.

    And none of this can answer the most basic question over exercise treatment in ME. Why would you recommend exertion for a disease where one of the most debilitating features is exertion intolerance?

    So, even with NICE’s ambiguous ‘flexible’ exercise, people could still be harmed.

    An ongoing war

    The new NICE guidelines are a small battle won in an ongoing war. This is far from over. For me, the following now needs to happen:

    • Patients harmed by GET and CBT need justice from PACE trial authors and proponents. That must be through the courts, the General Medical Council (GMC), or both. The quantitative evidence that these therapies were harmful has been around for over five years. So, someone needs to pay for the fact that medical professionals (and NICE) continued pushing these treatments anyway.
    • People also need a specific way to report harm caused by exercise treatment. The not-for-profit group ME Foggy Dog has a petition on this you can sign here.
    • What medical schools teach about ME has barely changed since 2002 with 41% not teaching students about the disease at all. The GMC and Medical Schools’ Council have oversight of what schools teach. So, they need to ensure medical education fits in with NICE guidelines. Health Education England (HEE), which also trains medical professionals, needs to do the same.
    More work to be done

    Also:

    • The Royal Societies need to sort their attitudes out. Then they must roll-out updated training programmes for their members. This must ensure that NICE guidelines are understood and followed to the letter.
    • There has to be a study into the links between ME and the hereditary, genetic connective tissue disorder Ehlers-Danlos syndrome.
    • Many people are unhappy with how the media portrays ME. Charities do not often represent the community or fight for it in the best way possible. So, the community needs to make a concerted effort to get the charities to up their game. Or we need to work out a new model for media engagement; one where misinformation about and misrepresentation of ME (and therefore the SMC specifically) in the media can be robustly countered.

    What can’t be answered though is whether any of this will actually happen.

    A public inquiry?

    Ultimately, as Eliot Smith wrote:

    Whatever happens now, it is too late for the millions of patients worldwide who have already died during the last century of “ME/CFS” disbelief. Many patients never had their illness validated nor were they treated with respect and compassion in their lifetimes.

    The time has come to call for an independent public inquiry into the history of the treatment of “ME/CFS” patients. Without such an inquiry, the systemic injustice and abuse experienced by patients cannot begin to be addressed.

    This guideline has the potential to open up a new chapter in the shameful history of this maligned illness. The opportunity to redress the wrongs of the past and create a better future must be seized with urgency and enthusiasm.

    A public inquiry is the least that should happen. And I agree with Smith that this is a moment of opportunity that needs to be seized. But the chaos and distress this has caused people cannot be understated. And the outlook around this disease cannot be painted as anything other than still dire.

    This changes nothing

    It’s taken me over a week to write this, due to a personal battle with my feelings on the situation. I really wanted to write how brilliant the NICE guidelines were. I’d love to say this marks a sea-change for people living with ME. Because I know how much the community needs hope.  But sadly, I don’t think that’s the case.

    Yes, NICE has removed GET. On paper, this looks like a breakthrough, but in practice it’s far from that – and it really changes very little. Doctors could well still cause patients harm. Justice for those already harmed seems a long way off. And nothing NICE has done will begin to change the deeply-held views among some medical professionals that ME is ‘all in people’s heads’. It will take a dramatic shift in every area of this debilitating disease for things to actually start changing. And I fear that will be left to the people actually living with it and their advocates to bring this about.

    Featured image via NICE – YouTube and NICE – screengrab

    By Steve Topple

    This post was originally published on The Canary.

  • 340,000 DWP claimants are affected by one court case

    The Department for Work and Pensions (DWP) is having to look at 340,000 people’s social security claims. It’s happening as a result of a court ruling from 2019. It could mean some claimants are entitled to more money. But with this being the DWP, it may not be that straightforward.

    The DWP in the dock

    In July 2019, the Supreme Court made a ruling about Personal Independence Payment (PIP). As the Mirror reported at the time, it was to do with people living with mental health issues. It wrote that the claimant known as:

    MM was rejected for PIP because [DWP] assessors said he didn’t “need social support” to engage with other people.

    Instead assessors said he only “needed prompting” to engage with people – a definition that carries fewer points under the scoring system for PIP.

    The Department for Work and Pensions (DWP) defended the decision on two counts.

    First, the DWP said “social support” meant someone trained and experienced in assisting people – not just a friend.

    And secondly, the DWP said the “supporter” has to be present at the time someone is trying to engage socially.

    The judges disagreed with the DWP’s interpretation of the second part. The judgment stated:

    Social support is likely to take many different forms, depending on the individual needs of the claimant.

    It is undesirable to attempt to prescribe, in the abstract, which other forms of support will be sufficient.

    It will be a question of fact and degree, and is something that will have to be worked out on a case by case basis.

    Changing the rules

    The DWP was forced to change its rules, and in 2020 it did so. At the time, minister Justin Tomlinson said the DWP:

    would be undertaking an administrative exercise to check whether claimants are entitled to more PIP as a result of the judgment. This is a complicated exercise and we are still planning our approach. This will be a substantial undertaking and will take some time.

    Now, over two years on from the court’s ruling, the DWP is finally following through.

    340,000 people affected

    The website Benefits and Work reported that:

    The DWP has estimated it will be checking 340,000 PIP claims to see if back-payments of £16,000 or more are owed. The review primarily relates to claimants with a mental health condition.

    It outlined which PIP claimants might be affected. It said these included:

    people who have regular meetings with a mental health professional, without which they would not be able to manage face to face encounters;

    people who need the input of particular friends or relatives with experience of supporting them in social situations – rather than just any well-meaning friend or relative – to help them manage face to face encounters.

    Don’t assume the DWP will do its job

    The DWP will be contacting people itself. But as Benefits and Work said, this doesn’t guarantee a lot:

    Experience of previous reviews suggest that almost no claimants will be contacted for further evidence and that very few of those who are entitled to a back-payment will receive one.

    Most affected claimants are likely to simply receive a letter out of the blue telling them that their claim has been looked at again following a change in the law and no change has been made to their award.

    Because of this:

    Benefits and Work is suggesting that you strongly consider contacting the DWP if you think you are affected by this decision.

    If this is you, then it might be a good idea to contact the DWP. Because it could well owe you money you’re entitled to.

    Featured image via Dan Perry – Flickr and Wikimedia 

    By Steve Topple

    This post was originally published on The Canary.