onoira

joined 9 months ago
[–] onoira@lemmy.dbzer0.com 22 points 1 week ago* (last edited 1 week ago)

i am disabled just enough to be in a dilemma.

interpersonal trauma, audhd burnout and immunodefficiency don't mean i can't do anything or that i can't even be as 'productive' *over time* as other people. what it means is that:

  • i can't give them ass-in-chair for 8 hours every day;
  • my shortterm 'performance' cannot be consistent or predictable enough for the boss;
  • i can never succeed at the day-to-day drudgework; and
  • i can never be a 'culture fit' in any workplace.

it's not that i can't do anything; it's that i lack the appearances of profitability.

despite huge past professional successes in complex projects: i am unemployable.

so instead i work a fulltime job with overtime researching my condition, my rights and the local law — filling out paperwork and attending a dozen appointments every month where i answer the same 20 humiliating and condescending questions over and over again, too exhausted to care for myself inbetween — just to keep the disability compensation flowing in. and in every meeting, my 'giftedness' and all those times where i was successful are used to clobber me and argue that i'm just being 'lazy'. i'm never given any treatment, because the healthcare system has been balkanized into poverty by privatisation and New Public Management, and they've tried nothing and they're all out of ideas.

i find time once or twice a month to study, on my own, with pirated courses and books. and the opensource projects i contribute to, and the organising work i scrape up spoons for, and the mutual aid and legal help i give to my disabled comrades, are things i still do. but i have to do them under aliases, and i can't ever discuss them with anyone who knows me, because if the welfare office finds out: i can end up imprisoned, indebted and permanently marked for 'welfare fraud'. because part of the deal of being disabled is that i can only be disabled.

no studies; no parttime; no volunteering; no activism. all because of the way i was born, and because i had the audacity to barely survive two separate attempts by politicians to sacrifice my demographics to Moloch. i know several other people in this same Kafkaësque hellworld.

how am i not supposed to end up radicalised?

[–] onoira@lemmy.dbzer0.com 11 points 1 month ago

there's a bot that will do this for you over on lemmy.world. i think you'd like it better over there.

[–] onoira@lemmy.dbzer0.com 1 points 1 month ago (1 children)

signed out, cleared cookies and cache, restarted browser, signed back in: same issue when in a new tab.

 

since the slow loading issues were resolved: using the default browser UI — every time i open dbzer0 in a new tab in Firefox — the page will appear as if i'm signed out.

i can fix this by hard refreshing, except on /posts. if i open a /post in a tab where i appear signed in, it loads correctly.

sometimes this happens on the subscribed feed page, where i seem signed out but i see someone else's subscriptions, but with my votes indicated. when i'm stuck like this, /unread_count is still polled for my account.

this doesn't happen to me on other instances.

[–] onoira@lemmy.dbzer0.com 11 points 1 month ago

And it probably would have been better for my mental health growing up if I hadn’t thought “wow if all these adults believe this thing then it must be true and I must just be an idiot” […] Basically the entirety of your hometown, and most of your family members are just delusional. You’re not wrong and they don’t just not believe you because you’re a kid, they just don’t believe in evidence, and there’s no evidence one can use to convince people who don’t believe in evidence.

for me, the thought was: 'wow, these are the people who get to have power over me? and they use that power to actively limit my potential and freedom of association? these are the people who keep clawing me away from independence, because they think they know better what's good for me?'

it made ageist remarks — particularly the sexist ones — go from irritating to infuriating. disappointment, anger and deep depression, that these people are allowed to have any responsibility at all.

[–] onoira@lemmy.dbzer0.com 18 points 1 month ago

when you have an AuDHD student who skips lunch every day to read and work in the library, and all the teachers are conspiracy-thinking fundamentalist yokels who: haven't studied anything in over two decades; only became teachers so they could have power over children; regurgitate superstitions, fakelore and urban legends; and have no concept of information/media literacy — then it's very possible to be smarter than your teachers and get regularly put in detention for pointing it out.

their diplomas would've been better used as toiletpaper.

[–] onoira@lemmy.dbzer0.com 9 points 2 months ago* (last edited 2 months ago)

a workplace problem that has persistently followed me thru my entire life: at school, at home, and at every job i've had, across multiple continents.

[–] onoira@lemmy.dbzer0.com 24 points 2 months ago* (last edited 2 months ago) (9 children)

i have a 'non-native' name which isn't hard to pronounce but which my coworkers refused to learn, so they started calling me something akin to 'Jane Doe' in $language.

when they were told by HR they can't do that: they took to the funny 'joke' of calling me "the bot" and sometimes referring to me as 'it'. 'hey, where's the documentation on this system?' 'idk, ask the bot' my manager even got on my case about how i shouldn't 'use ChatGPT to respond to work messages' — because i wasn't using 'enough emoji'.

but i'm the immature one for thinking all the NTs i've had in my life are insufferable. ok.

[–] onoira@lemmy.dbzer0.com 8 points 2 months ago

this is the type of comment i want to leave any time someone praises a scandinavian country for almost anything.

the image of the nordics most people outside of them have is from 40 years ago.

[–] onoira@lemmy.dbzer0.com 0 points 3 months ago (1 children)

We produce 1000 times the food we need.

no, we don't.

You’ve taken a roundabout way to tell me that mass adoption of veganism […] has nothing to do with our economic system.

no, i didn't.

(literally the only way to save this planet)

no, it isn't.

The only […] solution that can support our absurd population is […] tech advancements bordering on magic

no, it isn't.

Lying is ugly. […] It is trivial to prove. Open Google.

says the person who cannot read, ignores sources, puts words in other people's mouths, and makes simplistic, baseless, harmful assertions.

To feed the billions of sentient animals that are tortured to death each year in factory farms. Do you have any idea how sustainable that is?

i — a vegan — and the two sources i provided advocate for sustainable plant-based diets, and point to the systemic economic obstacles: agribusiness lobbying; little to no farmer control; subsidised incentives and poor farmers' dependence on these subsidies; and severe economic and political inequality.

to quote another vegan in this thread who you've insulted:

for every animal I don’t eat, a billionaire throws a meat party and goes hunting for exotic animals. Again, why are you blaming me? Even if I ate meat every meal I wouldn’t come close in a year to doing as much damage as a billionaire does in a day. So again, stop telling me about it and go after them.

you're arguing for a vote-with-your-wallet approach, which ignores conspicuous consumption, ignores the plight of the lower classes, and greatly favours the wealthy elite and the state (who can always outbid you). this is not to say we shoudn't change (our) individual behaviour, but that it cannot be the sole solution, and that there are systemic changes which would boost mass adoption of sustainable choices.


i once again point you to my book suggestion, the concept of superstructures, and to the responses to your last malthusian tangents.

if you have anything else to say: tell it to a mirror.

[–] onoira@lemmy.dbzer0.com 6 points 3 months ago* (last edited 3 months ago) (4 children)

Given that the environmental depredation of this planet is driven by […] can people explain why they believe that without capitalism

capitalist industry and commerce have been the driving force of the mass extinction of the last 500 years[0][1][2]. climate change didn't begin until the late 1800s with the rise of tycoons, and accelerated with mass production in the mid-1900s.

for a current example: datacentres are wasting entire regional electricity and water supplies on investment grifter bullshit. because it makes money. it doesn't even turn a real profit, and it's not everyday people paying for it.

can people explain why they believe that without capitalism everyone would be […]

could be, not necessarily would. because a humanistic, socialised means of production would: allow for truly 'democratic' control over what is produced; remove nested interests and subsidies to overgrown polluting industries[3]; and make alternatives viable without the need to bend or break to top-down market pressures and monetary policy dictated by dragons.

I also assume they’re wearing hemp and have no interest in fashion.

capitalism has existed for less than 300 years. consumerism has existed for less than 100 years. when you have an economic system which emphasises the independent individual — simultaneously a motivator and a mere cog in the machine — and posits that the mere potential to own things is the source of value: buying wasteful, exotic, unnecessary shit is a way to define yourself and your status. it's called conspicuous consumption, and it happens from the micro to the macro in the lower and the upper classes, and there's top-down pressure to do so to keep currency current.

i recommend the documentary The Century of the Self for an overview of the commodification of identity and culture.

Keep in mind there are 8 billion people on this planet, so presumably they wouldn’t be having children either.

we are already producing enough food to sufficiently feed 1.5x the world population[4], and could continue to do so even within planetary boundaries[5] with changes to economic policy and the adoption of less profitable methods of agriculture.


i didn't cover everything here, because i recommend:

  1. the book Less Is More.
  2. familiarising yourself with the concept of the superstructure; it's a very helpful analytical tool.
  3. going back to the last time you were on your malthusian debatebro bullshit and really trying to engage your imagination with much of the same arguments made there.
[–] onoira@lemmy.dbzer0.com 2 points 3 months ago* (last edited 3 months ago)

not the GP, but i did voice frustrations that were probably uncalled for.

i resonated with the image after this specific comment:

[…] assuming that all people are not going to be petty and antagonistic is even more utopian that post-scarcity.

this brought to mind thousands of conversations i've had before which would have effectively ended there — with the words 'utopian', 'idealist' or 'unrealistic'.

OP got some good answers which they seem satisfied with. this was all a reaction to the state of the discussion at the time.

I get that anarchists probably get tired of answering questions, but it also seems like an important part of getting people who aren’t already 100% onboard to better understand anarchy?

i think this works best thru sharing anarchistic (not specifically anarchist) books (to add perspective), and praxis (to experience/internalise anarchist organising principles).

hypotheticals can be amusing among likeminds, but it's usually just deconstructive otherwise.

57
submitted 4 months ago* (last edited 4 months ago) by onoira@lemmy.dbzer0.com to c/asklemmy@lemmy.ml
 

i was walking along some bushes when a bird flew out from a bush in front of my path into a grass clearing. it was a very small crow. it made two quiet, short, high-pitched peeps in rapid succession, hopping in circles. i tried to walk around it, but it kept blocking my path and making the exact same peeps at me.

i got back on the stone path, and it hopped up right next to me, and starting ripping up grass and throwing it over my feet. i chuckled, and it stopped, looked up at me, and… peeped again, before continuing to bury my feet in grass.

i continued walking and it followed right next to me till the end of the path before watching me walk away and then returning to its bush.

i didn't recognise this bird, or seen a bird do this to me or anyone else before. i'm on especially friendly terms with the corvids in my neighbourhood, but they don't normally approach me.

any ideas? have you seen something similar?

 

Today EU governments will not adopt their position on the EU regulation on “combating child sexual abuse”, the so-called chat control regulation, as planned, which would have heralded the end of private messages and secure encryption. The Belgian Council presidency postponed the vote at short notice.

 

https://bsky.app/profile/brenthor.bsky.social/post/3krzc7fs77k2i

Best job i ever had was maintenance guy at a nursing home. Loved it. Rewarding. Fulfilling. Paid only $10.75/hr so i left it and 'developed my career' and now im 'successful' but at least once a week i have dreams where im back in the home hanging pictures, flirtin with the ol gals, being useful.

So when people ask 'who fixes toilets under communism?' my answer is a resounding 'me. I will fix the toilets.'

 

cross-posted from: https://hexbear.net/post/2488210

I saw this thread in my Reddit feed: public hygiene in a communist society . I thought about replying there, but I think I'd rather post it here.


I think, if we are to consider ourselves Marxists, we should first take a look at not only the material history of sanitation workers, but look at how current societies handle the task of public hygiene.

Some related information about the USSR:

Public hygiene, in my opinion, includes things like Public Health. From the first link, we can get a sense of how the USSR tackled the task of ensuring the health of its citizens. It was clear as well that there were people involved in the task of keeping the streets clean, and they were using mechanized solutions for that task.

Japan is a notoriously clean country. When I visited several years ago, it was impossible to imagine how they kept it so clean, but it's not magic.

There are no public trashcans in Tokyo and mostly throughout Japan as well. This is a result of the Tokyo bombings in the mid-90s, which resulted in a ban on public trash bins. This obviously forces you to have to carry your trash with you to the next available trash bin, which you likely will find at your destination, be it work or a store.

But more interestingly, Japan attempts to instill in its young people a sense of cleanliness. Maybe this isn't a universal truth among all schools in Japan, but the essence of this thinking is sound. Having students clean their school, as part of the day-to-day ritual of learning, seems to instill in them a cleanliness mindset.

But let's look elsewhere [treehugger.com]

  • The sidewalks in Norway's relaxed capital city are known for being quite clean. Visitors might be puzzled, then, by the complete absence of trash cans around parts of the city. Mystery solved: Many Oslo neighborhoods are connected to the city's automatic trash disposal system, which uses pumps and pipes to move trash underground to incinerators where it is burned and used to create energy and heat for the city. With a city center that is almost completely free of fossil fuel cars and has the highest number of electric cars per person in the world, Oslo residents embrace the clean city lifestyle. The city has replaced hundreds of parking spaces with bicycle lanes and pedestrian areas.

  • Singapore's impeccably clean streets reflect some of the strictest littering laws and best public services in the world. Littering is a finable offense in Singapore. Steep taxes for owning a car and a useful public transportation system mean that the air is quite clean in this Southeast Asian city-state as well. Clean & Green Singapore is the city’s program to reduce trash and encourage residents to adopt a hygienic lifestyle. In an effort to become a zero-waste city, Singapore has created educational resources to teach residents how to recycle properly, use fewer disposables, and waste less food.

  • Already quite clean by world standards, Denmark’s capital city has taken steps to decrease littering and create trash and recycling schemes that make it easier to sort individual items. Copenhagen residents recycle electronic, garden, and bio waste in addition to the standard paper, plastic, metal, glass, and cardboard items. Copenhagen also stands out because of its air quality. It has reduced emissions by 42 percent since 2005 and is on track to be carbon-neutral by 2025. The city also has a number of impressive green traits, including a long-term plan to make itself the world's most bike-friendly city.

  • Adelaide, the capital of South Australia, frequently ranks among the world’s most livable cities for its cleanliness and quality of life. The city’s layout includes a tremendous amount of parkland and wide avenues lined with greenery. British surveyor and colonist William Light designed Adelaide in 1837 with the goal of creating a city that was compact and user-friendly, but also had an abundance of green spaces. City residents participate in the annual Clean-Up Australia Day event by removing debris from the 1,700 acres of parkland that surround the central business district.

  • A clean and sustainable city is part of the culture in New Mexico’s capital, where the annual Recycle Santa Fe Art Festival is dedicated to art made with at least 75 percent recycled materials. Keep Santa Fe Beautiful, a volunteer program, aims to prevent litter and boost awareness through educational programs. The city also holds volunteer trash pickup days, and many of the buildings in the main tourist areas, including the famous Santa Fe Plaza, are kept pristine as part of the aggressive historic preservation efforts that have helped this city retain its timeless appearance. The state of New Mexico, including the city of Santa Fe, has some of the nation’s strictest emissions laws.

  • While some cities' organizations sponsor once-yearly cleanup days, the Waikiki Improvement Association holds quarterly cleanups of its famous beach. Honolulu has also enacted strict litter laws. Severe penalties are imposed on those who violate these laws, including picking up litter as part of community service requirements.

So what do we see here?

  • State run events that encourage citizens to clean up their city.
  • Technological solutions to centralize and automate trash collection from pedestrians.
  • Cultural solutions that instill a cleanliness mindset in students that carries with them as adults.

But what causes a city or town to be uncleanly? Well, San Francisco has a poop problem, and wouldn't you know it, it also has a huge houseless problem. One of the ways that you tackle this Public Sanitation issue, is to ensure the source of the problems are solved, too. Remember, Marxism is a system of dialectics, which basically states that all things impact and shape all other things. Or more simply, nothing happens in a vacuum. If you're thinking, "Well, who is going to clean up the poop?" You're not thinking like a Marxist. You have to ask "Why is there so much poop?" which brings you to the houseless problem, which should then have you asking "So how do we solve this houseless problem?"

Tackling houselessness and taking a housing first approach, or doing something extreme like the USSR's communal flats, would obviously go a long way to easing the issue of public sanitation. Obviously, tackling the houseless issue will be shaped by the material conditions of the area in question. If there was some kind of, socialist revolution in America tomorrow, I see no reason why these massive, mostly vacant, office complexes in nearly every city couldn't be converted into housing-first epicenters.

Houselessness is only one of the things that can cause a Public Sanitation issue, there could be countless reasons why a given town or city has a Sanitation issue. You have to investigate these issues, and understand the conditions that create them, and change those conditions.

Another question we need to be probing too, however, is where do we even get this concept of "Janitorial" work? Is this just a social construction developed over time that we need to try and understand dialectically? I think it might be.

Let's see what this has to say: The History of Domestic Workers and Janitors.

Prior to the Industrial Revolution, a lot of people lived on farms, where everyone in the household did the work. The Industrial Revolution drove people to move to big cities and get jobs outside the home. In these gendered times, the man was the breadwinner and the wife cared for the home and children. Kids weren’t little workers like they were on the farm. 

Consider the theory of primitive accumulation in this context as well. As Feudalism succumbed to Capitalism, and land became privatized, peasants no longer had access to the land for their own subsistence, a work typically done by the women, as the men were converted in to wage laborers, and the family now required wages for food

But there was too much work for the women at home to do on their own. Between childcare, cleaning and cooking, it was too much. All of these newly domesticated wives wanted help. 

But bringing another adult into your home to help is complicated. They’re in your personal space–even your sexual space. They’re in your bedroom. The thinking was, we don’t want to bring in someone who’s our equal, someone from our own community. We’ll bring in someone who, by status, is below us. It could be an enslaved woman. On the East Coast, it was often a poor Irish immigrant working on a labor contract. On the West Coast, it was often an indigenous child, kidnapped from their own family and forced into domestic bondage. 

Here we can see, at least in the American context, how the requirement for free labor, not only of the women in the reproduction of the worker, also required it for the women, due in part to their alienation and isolation from the commons, the need for more unpaid labor in the form of servants or slaves

The reasoning was, When this servant is in our home, they don’t really count because they’re our social inferior. That’s why from the start, domestic work depended on social hierarchy, and the invisibility of the help.

This requirement of invisibility ultimately engenders disdain for this kind of domestic work. That disdain is developed and transformed over time into a classist point of view of domestic labor and janitorial labor.

This article goes on, and outlines how "the help" eventually was transformed into domestic cleaning and janitorial work we know today. You can see the social remnants of this development in the classist view of janitorial work that many people have. It also outlines how, through policy in the United States, domestic workers were kept behind the typical gains of the average worker.

For context, the Roosevelt Administration passed the New Deal in the 1930s. This reform gave workers the right to form unions and work shorter days. But the New Deal exempted domestic and agricultural workers. So those laws made a ton of jobs for white people work better. But because domestic work didn’t get fixed, it was the most marginalized people who were forced to stay domestic workers. 

Here’s another example: In 1950s Detroit, the minimum wage and 40-hour workweek were already in effect. But many black workers didn’t get these rights, unless they were in an autoplant with a union. Many black people in Detroit had jobs that were invisible: housecleaner, car wash attendant, laundress, dishwasher in a restaurant. Yes, you earned minimum wage, but you worked 70 hours a week.

This eventually leads us to where we are today:

Being a domestic worker in 2021 is much better than being one in 1870. People have more leverage now. What’s unfortunately stayed the same is that domestic and janitorial work is still largely invisible and low wage. And it’s still a profession that’s performed largely by poor women, people of color, and immigrants. In recent times, we haven’t seen another round of much-needed reforms. 

So this is where the heart of the question comes from. Your friend is effectively asking: "Who will be the invisible help who cleans up after me in a Socialist arrangement of the economy" and also saying, "No one wants to be a Janitor because, look at how we treat them. God help me if that becomes me."

This is why the question of "Who does the dishes after the revolution?" is such a farce. It assumes that we will still have the class structures we have today, and that we would still have these backwards views on this type of work. It also exposes the individual, showing you what they really believe, which is that there should be an underclass who keeps everything clean for the upper class.

What we've seen in our current context above is that we can solve many of these Public Sanitation issues in many ways that don't involve an underclass.

  • Japan has students keep their school and classroom clean, and instills in their students a cleanliness mindset.
  • We can take Japan's model for students and apply it to the workplace. Workers spending a portion of their day ensuring the workspace is clean. We know this is already done in places like Grocery Stores, but it should be extended to all workspaces.
  • Norway uses a complex system to collect and incinerate trash placed into public bins, generating heat to be reused by citizens and automating the process of trash collection and disposal.
  • The USSR created a public sanitation organ of the state for tackling infectious diseases.
  • Solving the houseless crisis will lead to fewer people living without shelter, and consequently not leaving their trash in public or having to defecate outside.
  • Cities and States can organize citizen lead cleaning efforts regularly to not only clean the space we all live in, but also build community around keeping our space clean.

What we've seen in our historical context below is that our views on domestic and janitorial work are rooted in patriarchal and racist world views, world views that developed from the transformation of the peasant to the wage laborer, the subjugation of women under the demands of capitalism, and capitalism's exploitation of free labor, in the form of slaves and the domestic work of women. There is a dialectical connection between our views on Janitorial Labor and Domestic Labor, Patriarchy, and White Supremacy.

So to answer the question of "Who will do the dishes after the revolution?" The answer should be "All of us."

 

cross-posted from: https://kbin.social/m/anarchism@lemmy.ml/t/955050

We're in the middle of a plague

[Click to listen to the article, and support the Canary]

The NHS killed Sophia Mirza on 15 November 2005. Sophia lived with myalgic encephalomyelitis (ME/CFS). In July 2003, psychiatrists got cops to smash the door into Sophia’s home down and forcibly take her to a secure psychiatric unit, where she was imprisoned against her wishes for two weeks before a tribunal ordered her release. This ultimately led to her death.

In January 2024, Olivia Jane Mott travelled from the UK to Dignitas in Switzerland to end her own life. She lived with ME. On 27 March 2024, Lucy Mayhew died. She lived with ME.

Right now, Millie McAinsh is dying in an NHS hospital because doctors don’t believe her illness is real. They previously sectioned her under the Mental Health Act, enforced Deprivation of Liberty Safeguarding (DoLS) measures on her, and are forcing her to have treatment she doesn’t want. Millie lives with ME. So does Karen Gordon – in an almost identical situation to Millie.

So, nearly 20 years after the NHS killed Sophia, people living with ME are still dying while the state either lets them or actively brings it about. The obvious question is why? Well, the Canary has extensively documented the answer to that.

However, the less obvious but perhaps more necessary question is why are we allowing this to happen?

ME/CFS: inaction, inaction, inaction

The answer to that is a complex melting pot of issues, including (but not limited to):

  • ME/CFS is still poorly misunderstood – or rather, made out by the medical profession, the state, and media to be.

  • The ME community exists in the most part of people online who are a) clued-up on the issues, and b) have a diagnosis in the first place. Read this about fibromyalgia and ME diagnoses.

  • People have their own political views which play into how they respond to situations of injustice, abuse, and discrimination. We’re a mixed bag of left, right, and no wing.

  • The full force of the media and state has been consistently putting its boot on the neck of the ME community.

  • Charities and Disabled People’s Organisations (DPOs) within the community tend to work to their own agendas – not collectively.
    But one of the most pressing one is the community’s inability, and in some cases unwillingness, to protest.

Where are the protests? Where are the occupations?

Campaigning, protesting, and taking direct action have throughout history been the way ordinary people have brought about change. Be under no illusions: it is NOT politicians, charities, or the state who do – and even when they have, it’s because people like you and me have forced them to.

However, this has always been the circle that (until this point) cannot be squared: severely chronically ill and disabled people cannot easily protest. They’re bodies often won’t let them. So, they need allies and advocates to do it for them.

Yet where are the protests from non-chronically ill allies?

I seem to recall some shoes being placed outside the Department of Health and the BBC a few years ago (I’m being wry – I was there). Otherwise, the ME community doesn’t protest – unlike nearly every other marginalised group in the UK.

For example, me and my partner Nicola were literally blocking one of the main arterial roads into Westminster with other disabled people a few weeks ago. It was over benefit-related deaths. Cops kettled disabled wheelchair users and threatened people with arrest.

Yet that pales in comparison to the tens of thousands of people who have died under the Department for Work and Pensions (DWP) regime; one the UN said caused “grave” and “systematic” violations of chronically ill and disabled people’s human rights.

ME/CFS: we literally have nothing to lose

So, why has the ME community not embraced direct action and protest as part of its strategy?

I can’t safely answer that. That’s for all of us to reflect on. I think there’s elements of class within this. Many marginalised communities are also socioeconomically marginalised by the state. That is, they’re poor in every sense. Specifically, not only does the state marginalise you for, say, your ethnicity or disability, it also marginalises you economically.

As American writer and civil rights activist James Baldwin summed up:

The most dangerous creation of any society is the man who has nothing to lose.

Black people, disabled people, refugees, non-working people all have the least to lose – therefore, civil disobedience isn’t as daunting.

The ME community needs to fully recognise its own marginalisation and take that to its very core. Millie is a case in point for us all: she has little to lose, now – and things can’t get much worse.

Shut up and sit down

There’s another element to this lack of protest and direct action.

Regarding Millie, I keep seeing comments, and am also being told privately by quite well-known figures in the ME community, that:

Things are going on behind the scenes.

But:

You shouldn’t really do ‘x, y, z’ as it will make the situation worse for Millie.

And:

The ME/CFS charities are working with Millie’s family.

If I hear another comment along these lines I’ll scream.

Whatever the ME charities and those in the self-appointed (which they are, unless people with ME took a vote on it that I missed) upper echelons of the community have been doing since the NHS killed Sophia on 15 November 2005 HAS NOT WORKED. If it had, Millie and Karen would not be in the situation they’re in.

Olivia would still be alive.

Lucy would still be alive.

And Merryn, Maeve, and Kara Jane would still be alive.

Nothing has worked in 20 years.

Labour MP Debbie Abrahams once said in parliament regarding the tens of thousands of disabled people that have died on the DWP’s watch:

Does the minister think that it is unacceptable that any government policy should cause their citizens to take their own life or to die? If he does, should there not be a moratorium on this policy until it is got right? Surely one death is one too many.

Why has the ME community for decades accepted so many deaths of its own?

It is past time that the ME community realised that we are perpetually going round in circles, doing the same things over and over again – and that they are not working.

It is also past time that the ME community stopped allowing certain gatekeepers to govern how it conducts itself and how it responds to the abuse medical professionals and the state inflicts on its members; abuse that is not inflicted on those same gatekeepers.

And it is past time that the ME community stopped putting its faith in charities who take hundreds of thousands – sometimes millions – of pounds every year in donations and yet demonstrably achieve absolutely nothing with it.

That is, the ME community and its allies in other chronic illness communities like long Covid need to take matters into their own hands. Enough really is enough this time.

Get our acts together, or we are as good as dead

Larry Kramer was the founder of direct action group AIDS Coalition to Unleash Power (ACT UP). Him and his supporters advocated for disruptive civil disobedience in the face of the HIV/AIDS crisis that was sweeping the US in the 1980s.

ACT UP members repeatedly got arrested for actions like blocking roads. However, Kramer and his group changed the course of HIV/AIDS: how it was viewed by the public, how it was represented by the media, and ultimately how it was treated by medical professionals.

He once said:

I was trying to make people united and angry. I was known as the angriest man in the world, mainly because I discovered that anger got you further than being nice. And when we started to break through in the media, I was better TV than someone who was nice.

The ME community has been “nice” for far too long. It’s not like we’re complaining about potholes, tree-felling, or London’s ULEZ scheme. We’re fighting against the state-run health service literally killing members of our community. Yet, all those three other examples I gave have seen bigger – and often more civilly-disobedient – protests than the ME community has ever engaged in.

Crucially, though, Kramer famously screamed in the middle of a meeting of AIDS activists who were arguing among themselves and utterly disorganised:

Plague! We are in the middle of a plague! And you behave like this! Plague! 40 million infected people is a plague! Until we get our acts together, all of us, we are as good as dead.

So, get their act together they did.

The ME/CFS community needs it’s own ‘plague’ moment

The ME community’s “plague” moment should have been Sophia’s killing in 2005.

But it wasn’t.

It should have happened at the start of the coronavirus (Covid-19) pandemic.

But it didn’t.

It should have been Merryn’s, Maeve’s, Kara Jane’s, and every other person with ME’s deaths because of how the system has treated them.

But it wasn’t.

So, I ask you this: is it going to take the NHS killing Millie for the ME community to have its “plague” moment and finally ‘get its act together’? Because that cannot happen.

Millie’s story – ending with her returning home to safety – must be a watershed moment for all our sakes. It must be a moment where we as a community stare at ourselves in a mirror until our eyes collectively bleed and ask ourselves whether what we are, and have been, doing is right – and if we should continue with it.

And I can tell you now: the answer to those questions is ‘no’.

view more: next ›