Today in Labor History June 27, 1880: Helen Keller was born (1880-1968) in Tuscumbia, Alabama. In addition to being an early advocate for disability rights, she was also a radical socialist for women’s suffrage and birth control, the rights of workers and world peace. She supported the NAACP and was a founding member of the ACLU. She also joined the IWW and wrote for them from 1916-1918. In 1933, the Nazi Youth burned her book, “How I Became Socialist.” However, like many people of her era, from both the right and the left, she supported the eugenics movement and once claimed that the lives of infants with severe cognitive impairments were not worth saving. She published 12 books. Her most famous was her autobiography, “The Story of My Life,” (1903).
Mask bans tell disabled people they don’t matter. That since we aren’t willingly “just staying home forever” you’re going to FORCE us by making it illegal for us to protect ourselves.
For what? So you don’t have to see a visual reminder that we’re still IN A PANDEMIC. So that you don’t have to question if perhaps YOU should be masking (you should be).
You’re supporting eugenics & ableist policies that are inching closer & closer to fascism while claiming to be all about “freedom”. Please see the absurdity of this and help us fight these dangerous & discriminatory bans.
It’s been a particularly difficult week where I’ve been let down by a number of people who I thought had my back… and the rampant ableism in society is wearing on me.
I revisited one of the first articles I wrote about being disabled & chronically ill… and am saddened that nothing has changed. Things haven’t improved and if anything people are LESS tolerant & more ableist now than a year ago.
It all started when someone said to me “you’ve been sick for years - just die already”. Whenever I think of that statement I find myself wondering if people would have EVER said something like that before Covid. Many may have thought it - but would they verbalize it?
The pandemic is fueling hatred of disabled and chronically ill people to the point where they will say the cruelest things without a second thought - and it’s leading nowhere good.
A few months ago a friend told me I needed to stop “being a burden” on those around me & find somewhere with round the clock care to live & accommodate my disabilities. Knowing no such place exists for someone like me - I gave them a challenge.
I told them that I had looked for such a place many times - and I’ve come up empty because people like me (relatively young with unstable chronic illnesses) fall through the cracks. We aren’t considered when care homes are being established.
We have homes for the elderly, rehab centres and hospices but almost nothing for a young person who isn’t imminently dying but also has no expectation of improvement. I challenged this friend to find me a place - within a reasonable budget - and said if they did I would move.
Of course they were unable to find anything - and in fact even when they tripled their budget they came up empty. There was one contender that provided a brief glimmer of hope - but as soon as they discovered my heart condition they said no.
The reason? “She’s too unstable and we don’t have adequate monitoring. She should be in hospital or try hospice.” Most chronically ill people know that hospitals are short term solutions & will often discharge you before you’re strong enough to be on your own.
And hospice? You can’t enter hospice unless you are imminently dying. So around & around this friend went… hitting all the same roadblocks I’ve hit time and time again. Finally they asked if I considered private in home nursing?
In home nurses where I am start at around $36/hour. If you need round the clock care that’s just over $6000 a week. Clearly not an option for the vast majority of people.
Finally my friend conceded that I was right and there was no magical place where I could have round the clock care & cease being a “burden” to those around me. They were flustered and apologetic & kept saying “I just assumed you hadn’t really looked”.
Therein lies the problem for so many of us - our friends & family always seem to assume they know better and/or that we have simply failed and not “tried hard enough”. The reality is we often spend all our energy looking for solutions - but those solutions simply don’t exist.
I thanked my friend for apologizing & for their efforts in trying to find a place - but I also asked them to consider how it feels to be called a “burden” just for needing support to survive. To be told you needed to go away & stop “bothering” friends & family?
Of course my friend didn’t have an answer - just uncomfortable silence followed by some muffled apologies. I share this story to implore people to stop assuming disabled people haven’t already tried the things you’re suggesting.
This doesn’t mean it’s wrong to make suggestions. But if we tell you we’ve already tried it and it’s not an option - believe us. It’s exhausting spending your days dealing with chronic illness - we don’t need to be explaining ourselves to people who should have our back.
Lastly - disabled people are NOT a burden. There’s nothing wrong with needing help to survive. Telling someone they should feel bad about receiving that help is an unkind thing to do. Please offer help or keep quiet. Most importantly - believe us when we say we’ve tried.
Being disabled & chronically ill is beyond lonely. Far too many people in society can’t comprehend illnesses which are permanent & unrelenting but don’t necessarily kill you. As a result they EXPECT you to get better.
When you don’t - they abandon you.
People understand illnesses like cancer - you get sick & get better or you die. They can support & empathize with that.
When it comes to chronic illness … that support & empathy dries up. The idea that someone could be sick FOREVER & not die is too much for people.
I understand it’s not something anyone wants to think about. The idea of being sick forever with no end in sight is understandably scary. But just because something is scary doesn’t mean it’s not real. It doesn’t mean it’s fake or an exaggeration.
The unwillingness of people to confront their own frailty - to consider the possibility that they could lose their health one day - leads them to isolate those of us who are chronically ill. They disappear us so they don’t have to face it.
It often starts with comments like “I’m sure it can’t be THAT bad” or “you just need to try harder”.
Gaslighting remarks that are disguised as kindess when in reality they tell us you don’t believe us. Then people start asking “are you better YET?”
That one really hurts because the emphasis is always on the “yet”. It’s as though our still being sick is an inconvenience to THEM. No thought is ever given to how awful it makes us feel to have to explain for the millionth time that we aren’t ever getting better.
These exchanges go on for awhile until they succeed in either pushing us away - or they inevitably ghost us. But the result is always the same. Friends and family lost from our lives & us facing our illness alone.
This loneliness drives a lot of people to look for community on social media. It’s an invaluable place to connect because we can find like minded people & engage without ever getting out of bed. We don’t have to shower or try and look “our best”. We just have to show up.
Unfortunately there’s people who seek to tear down the connections you make online - either by invalidating them or by incessant trolling which render it nearly impossible to use the website. This has gotten much worse since Covid.
All of these things lead to an isolated and lonely life - one where there’s a lot of longing. I long for someone who will show up for me & help me without judgement. Without dismissing my concerns or insinuating I’m not really “that sick”. I long for safe & loving connection.
I worry that Covid has only intensified the loneliness for the vast majority of chronically ill people. Those who are desperate to believe Covid is over NEED us disappeared. We are a constant reminder of the fact that they’re risking their health - and they don’t like it.
I understand why they don’t want to face us. No one wants to face a reality of lifelong chronic illness. But turning away won’t save you. We can HELP protect your health. We can help build better safety nets so if you ever DO become sick you won’t struggle the way we do.
Plus you can help us. We’ve already lost so much. Our health. Our independence. Our agency in many healthcare decisions. Our ability to safely access public spaces. Our friends and family.
We need allies we can count on to be there to support us. Who believe us.
My ask of all people tonight is to take a moment and think of the sickest you ever were - whether that be a flu or Covid, food poisoning or surgery recovery - and imagine feeling that way for the rest of your life. Imagine knowing there was no end in sight.
Once you imagine that - consider how hard that reality might be in a world that’s screaming at you to “just stay home” or blaming you incessantly for covid mitigations. In a world that doesn’t even think you deserve safe access to healthcare. In a world embracing euthanasia.
Now reach out to a disabled or chronically ill person in your life. Tell them they’re cared for. Ask if they need any support. If you don’t know any disabled people …
Find an account on here & follow and amplify them. I promise we need that support now more than ever.
The proposed mask ban in North Carolina will turn people who are trying to protect their health (and the health of others) into criminals.
While the action of the government doesn’t surprise me - the response of the public does. I expected most people to find this type of law appalling - and instead I’m seeing people celebrating what I consider to be eugenics in action.
I wrote about the proposed bill, the public response and the disability community’s right to survive:
NC are proposing a bill to ban masks (including medical masks) in public settings. This is not only discriminatory - it’s dangerous. It’s removing the LAST tool we have to protect against COVID.
It also sets dangerous precedent & fuels damaging narratives about COVID.
The proposed bill would see all masks banned in public settings. If a person requires a mask - they would need to have a medical exemption. Disabled people are exhausted. We’ve been forced into dangerous situations for 4 years thanks to “you do you” COVID policy.
To now expect us to do additional work to procure a medical exemption just to be able to wear a respirator to help us prevent death or further disability? It’s unnecessarily cruel. Doctor’s appts & notes cost money. They’re not accessible to everyone.
COVID mitigation is already a significant social justice issue. By virtue of the fact our governments and public health have done nothing to protect people - individuals are left to procure protection for themselves. This protection isn’t affordable for everyone.
Respirators, HEPA filters, rapid tests, far UV… all these tools are out of financial reach for many people. We have fantastic organizations attempting to get respirators into the hands of those who need them - but some people are always left behind.
Now we’re adding an additional barrier by putting the burden of proof that a mask is required on the disabled individual. We’re forcing them to risk exposure to go to a doctor, spend money out of pocket for a note and then carry it around in the hopes they don’t get arrested?
If governments and public health would take Covid more seriously -
People wouldn’t need to don respirators nearly as often. But when the powers that be take away access to vaccines & anti-virals, refuse to clean the air, provide testing or paid sick leave? We have no choice.
Even if everything goes perfectly (which rarely happens) and a person has access to a respirator, can afford to see a doctor & obtain medical exemption… there’s still a good chance they’ll be forced to remove their mask while law enforcement analyze the exemption’s legitimacy
COVID infects extremely quickly. Breaking the seal on your respirator - even briefly - can result in infection. We’re asking people to jump through an inordinate amount of hoops and spend ridiculous amounts of money only to quite possibly end up infected anyways.
There’s also a bigger issue that stems from the idea that the “medically vulnerable” can and should obtain an exemption. It continues to drive the narrative that Covid is ONLY a threat to people who are already vulnerable. Which we know is untrue.
COVID is a multi system disease that has a 10% chance of causing disability. The odds of Long Covid go up with each infection. It’s not 10% in those that are already vulnerable - it’s everyone. Many young & healthy people have had their lives ruined by this disease.
The lie that only the vulnerable need to be concerned is one of the most devastating of the pandemic. People are getting infected over & over & think they’ve “gotten away with it”….When there’s good odds that they’ve got silent damage & their next infection will disable them
It also propagates the notion that the vulnerable are expendable. That it’s ok if we die or become further disabled because the rest of the world needs to “go back to normal”. There’s nothing normal about a society that turns its back on others.
This desperation to return to the way the world was in 2019 is quite literally killing people. It’s ruining lives. It’s dividing people, straining healthcare systems and causing long term health consequences that will have ripple effects for decades to come.
This NC bill to ban masks is just the latest in a string of terrible decisions that are costing lives. And it didn’t have to be this way. Had we admitted Covid was airborne and worked to implement clean air standards - we wouldn’t be in such a dire situation now.
Disabled people are not ok. The pandemic has turned society against us (even more than before).
People were quietly ableist before. Now they’re openly hateful.
It was hard to access healthcare before. Now it’s impossible.
It was lonely before. Now it’s a pit of despair
It’s been an incredibly difficult 4 years for disabled and vulnerable individuals. We’ve had to endure terror of knowing we will be triaged out of medical care if system is overwhelmed, have DNRs forced on us & are witnessing aggressive expansion of medically assisted death
We’ve watched as the world clamours to get “back to normal” while completely leaving us behind. We are told to “just stay home” because people don’t want to push for clean air initiatives and can’t be bothered to mask.
Even in hospitals - the one place we have no choice but to go - masking is not required & you run the risk of being labeled difficult or anxious for requesting a HCW mask in your presence. We’re expected to just go along and risk our health & baseline for the comfort of others
When we speak up - we’re shouted down by people who are utterly convinced that the pandemic is over and there’s no risk. We’re told we’re wrong, exaggerating, hypochondriacs or worse. We endure endless trolling & criticism for just wanting to survive.
It didn’t used to be like this. Ableism has always existed - but it was never as aggressively in your face as it is now. People are experiencing trauma from Covid… and rather than cope with it they seem to be lashing out at disabled individuals.
I don’t know if it’s because many mitigations were sold as a means of protecting the vulnerable - or maybe it’s just because we represent a reality people can’t face.
That health is not a permanent state. That Covid is not over and that anyone can become disabled at any time
Whatever the reason - the result is the same. A society that treats disabled people as “less than”. That wants us out of sight & out of mind and that won’t do the bare minimum to protect us. That look the other way when we tell them eugenicist policies are going to end lives
It’s exhausting and terrifying and sad. I’m tired. We are ALL tired. Yet so many of us spend whatever incredibly limited energy we have continuing to advocate for safe public spaces, safe healthcare and an end to eugenics. We fight for equality. And we need allies.
Please remember this the next time you’re entering a public space without a mask. Or tempted to mock a vulnerable person for wearing one. Or accessing healthcare. If it’s easy for you access care - try and imagine how scary it would be if it wasn’t.
Try and have compassion and empathy for people who are different than you. Try and face the difficult truth that one day you too will be disabled - and when that day comes you will want to be treated better than we are currently being treated.
I promise you it’s far easier to advocate from a position of health & strength… so join us. Be our allies. Listen & believe us when we tell stories of unsafe spaces, eugenics and discrimination. Help us change things so that everyone will be better off. /end
"The term “eugenics” (from the Greek for ‘well born’) was birthed here in Cambridge by Trinity’s own Francis Galton in 1883. Galton was inspired by his cousin Charles Darwin and adapted the idea of natural selection to presuppose that the survival of the fittest had been distorted by social welfare policies."
People keep shouting that if disabled people can’t cook or clean they should be institutionalized. Apparently accommodating us so we can live independent lives is angering others. Setting aside how awful many care homes are - do you realize there aren’t nearly enough beds?
I get that many ppl seem to want to completely disappear us from society. Seem to think we would be “better off” institutionalized even though many homes are dangerous places for disabled ppl. Even IF they were all sunshine & lollipops …do you think there’s enough of them?
Do you think they accept people of all disabilities? This idea that we should all have families or full time caregivers to support us is nonsense. It’s unrealistic and in many cases unnecessary. Many of us can & do learn to adapt on our own with part time help where available
The reality is we don’t have enough long term care beds to support everyone who’s chronically ill. Many places won’t take you until you’re a certain age. Many deny if you’re too unstable or don’t have rehabilitation goals. I know. I tried to find one & was repeatedly denied.
Stop assuming there’s some society wide program that places disabled people in homes that suit their unique circumstances. Many congregate settings are vectors for disease and neglect. We have to beg for access to places that often make us worse & reduce our quality of life
When you’re tempted to shout that we belong in a home - consider if it’s where YOU would want to be. Also look around - many countries are rapidly expanding their euthanasia programs to include disabled people with non terminal illnesses. Why do you think that is?
We are seeing rising disability numbers due to Covid - and the sad fact is we didn’t have enough supports for disabled people before the pandemic. We certainly can’t support the influx that’s currently occurring. So we are offering DEATH instead. Dead people cost less money.
I know folks are stuck in denial. They don’t want to accept the society wide risk associated with unmitigated COVID spread. But we are begging you to try. Try and think critically about WHY governments are expanding euthanasia programs.
Believe us when we tell you the dire lack of support available. We aren’t shouting about this because we want sympathy or enjoy complaining - we’re shouting because we can see the writing on the wall. We know our systems can’t support this much disability & people will suffer 1/2
Today In Labor History March 26, 1910: Congress amended the Immigration Act of 1907 to specifically bar entrance of “paupers, anarchists, criminals and the diseased.” The amendment was specifically designed to limit entry of Eastern and Southern European immigrants, many of whom were becoming radicalized by the deplorable working and living conditions in late 19th and early 20th century America. The law came in the midst of a wave of anti-immigrant hysteria, whipped up by government and media-generated pro-eugenics propaganda. The original law included the following statement of “undesirables” to be prohibited entry into the United States: “All idiots, imbeciles, feebleminded persons, epileptics, insane persons, and persons who have been insane within five years previous; persons who have had two or more attacks of insanity at any time previously; paupers; persons likely to become a public charge; professional beggars; persons afflicted with tuberculosis or with a loathsome or dangerous contagious disease.”
#Zionism & #Nazism share so much more than just theory of #Eugenics, #BankOfEngland funds, and inhumane treatment of #HumanAnimals. Ethnic cleansing was mentioned quite often in other words on #hebrew TV, while the investigation of #ICJ continues to gather more evidence on the intention of #genocide in @palestine. Arthur Ruppin University is manufacturing consent on strict immigration today and haven't changed that much from the original #ZioNazi ideology.
so am using a cane these days after being unable to walk a few steps w/o fatigue or vertigo. am happy as it's what i need to get better from #cancer.
but the excitement of walking to my new oncologist's office, which is at a subway entrance, was squashed by Hochul deploying armed Nat'l Guards in our subways. that means cops are everywhere in the area.
cops kill the disabled at alarming rates. am now a disabled BIPoC.
i came of sexual age during the middle of the #AIDS#pandemic.
had it not been for ACT-UP many of us GenXers would have been dead by now. they FORCED the mainstream to reckon with the virus's devastation and the Reagan and Bush policies that were nothing but #eugenics served over "kinder, gentler" platitudes.
AND YET, i'd cringe when Larry Kramer would talk about USGov's fascist health policies.
Larry, you were right. fascism been here for a long ass while.
If you'd like to understand the link between the current #AI fixation of Silicon Valley billionaires and its roots in #eugenics and racism I highly recommend reading this series of articles. The term #TESCREAL has been created to summarize the different movements, some of them decades old, that are in play here. Eye-opening, alarming stuff, to be sure. https://www.truthdig.com/dig-series/eugenics/ Warning: This isn't something for fast consumption, other than most websites people link to these days.
Today in Labor History February 20, 1905: The U.S. Supreme Court upheld the constitutionality of Massachusetts's mandatory smallpox vaccination program in Jacobson v. Massachusetts. There were lots of problems early on with the vaccine. For one, they reused needles, causing the transfer of syphilis from infected to uninfected people. They also had problems with bacterial contamination of the vaccine that made some people sick. On the other hand, because of global mandatory vaccination programs, the disease was eradicated in 1977, the only human disease to be completely wiped out. By the mid-1950s, over 2 million people were dying worldwide annually.
With respect to personal freedom, the Court ruled in Jacobson that individual liberty is not absolute and is subject to the state’s use of police power. Consequently, Jacobson has been invoked in other Supreme Court cases to justify police power. The ruling led to a mobilization of the anti-vaccination movement and the creation of the Anti-Vaccination League of America. The Jacobson ruling was later invoked to support forced sterilization of those with intellectual disabilities (Buck v Bell, 1927); the federal partial abortion ban (Gonzales v Carhart, 2007); drug testing of students (Veronica School District v Acton, 1995); and, most recently, COVID mitigation mandates, like face masks and stay-at-home orders.
Just a reminder that, following the Royal Society event in Jan, my article 'Mendel's Closet: Genetics, Eugenics and the Exceptions of Sex in Edwardian Britain' has been made freely available until the end of Feb/LGBTQ+ History Month.
Today I'm writing about how sex selection emerged as one of the leading promises of 20th-c. biologists/eugenicists as they got to grips with sexological genetics. 😬
Ad for The Science of Life (by Julian Huxley, G. P. Wells, & H. G. Wells) in Popular Science Monthly (March 1931).
Today in Labor History January 28, 1935: Iceland became the first Western country to legalize therapeutic (elective) abortion. The Soviet Union legalized it in 1919. And the Nazis legalized abortion in 1935, but only to get rid of what they considered genetically inferior people. They prohibited women of Protestant German heritage from having abortions.
Gynandromorph bordered white moth from Charles Barrett's Lepidoptera of the British Isles (1901). 🦋
At 11am (GMT) next Wednesday (31 Jan) I will be discussing my article 'Mendel's Closet' as part of the Royal Society history of science seminar series. 🏳️🌈 🧬