Now Thats What I Call Ableism! - Tumblr Posts
Disability rights should extend to people who did that to themselves. To the bloke who got paralysed because he was trying to do a dumb trick on his skateboard, to the person who has diabetes because they ate unhealthily, yes even to those people who got blinded at that NFT convention.
As an on again off again alcoholic who has tried and tried again at recovery, I find myself in a space now where I'm starting to lose my liver function, and I'm now therefore chronically ill. And it sucks, I've tried medication that just exacerbated my mental health issues and I'm signing up for my fourth AOD service. It will always be my fault that I'm chronically ill, but the idea that there are good disabled people and bad disabled people kicks people like me out in the cold.
I think everyone deserves equal opportunity to access disability services, get government pensions, use mobility aids, etc etc, without people going 'actually, you did this to yourself'.
Long covid has derailed my life. Make no mistake: It could yours, too.
By Madeline Miller for the Washington Post, August 9th, 2023.
Audio version available in the inline link.
Madeline Miller, a novelist, is the author of “The Song of Achilles” and “Circe.”
In 2019, I was in high gear. I had two young children, a busy social life, a book tour and a novel in progress. I spent my days racing between airports, juggling to-do lists and child care. Yes, I felt tired, but I come from a family of high-energy women. I was proud to be keeping the sacred flame of Productivity burning.
Then I got covid.
I didn’t know it was covid at the time. This was early February 2020, before the government was acknowledging SARS-CoV-2’s spread in the United States.
In the weeks after infection, my body went haywire. My ears rang. My heart would start galloping at random times. I developed violent new food allergies overnight. When I walked upstairs, I gasped alarmingly.
I reached out to doctors. One told me I was “deconditioned” and needed to exercise more. But my usual jog left me doubled over, and when I tried to lift weights, I ended up in the ER with chest pains and tachycardia. My tests were normal, which alarmed me further. How could they be normal? Every morning, I woke breathless, leaden, utterly depleted.
Worst of all, I couldn’t concentrate enough to compose sentences. Writing had been my haven since I was 6. Now, it was my family’s livelihood. I kept looking through my pre-covid novel drafts, desperately trying to prod my sticky, limp brain forward. But I was too tired to answer email, let alone grapple with my book.
When people asked how I was, I gave an airy answer. Inside, I was in a cold sweat. My whole future was dropping away. Looking at old photos, I was overwhelmed with grief and bitterness. I didn’t recognize myself. On my best days, I was 30 percent of that person.
I turned to the internet and discovered others with similar experiences. In fact, my symptoms were textbook — a textbook being written in real time by “first wavers” like me, comparing notes and giving our condition a name: long covid.
In those communities, everyone had stories like mine: life-altering symptoms, demoralizing doctor visits, loss of jobs, loss of identity. The virus can produce a bewildering buffet of long-term conditions, including cognitive impairment and cardiac failure, tinnitus, loss of taste, immune dysfunction, migraines and stroke, any one of which could tank quality of life.
For me, one of the worst was post-exertional malaise (PEM), a Victorian-sounding name for a very real and debilitating condition in which exertion causes your body to crash. In my new post-covid life, exertion could include washing dishes, carrying my children, even just talking with too much animation. Whenever I exceeded my invisible allowance, I would pay for it with hours, or days, of migraines and misery.
There was no more worshiping productivity. I gave my best hours to my children, but it was crushing to realize just how few hours there were. Nothing was more painful than hearing my kids delightedly laughing and being too sick to join them.
Doctors looked at me askance. They offered me antidepressants and pointed anecdotes about their friends who’d just had covid and were running marathons again.
I didn’t say I’d love to be able to run. I didn’t say what really made me depressed was dragging myself to appointments to be patronized. I didn’t say that post-viral illness was nothing new, nor was PEM — which for decades had been documented by people with myalgic encephalomyelitis/chronic fatigue syndrome — so if they didn’t know what I was talking about, they should stop sneering and get caught up. I was too sick for that, and too worried.
I began scouring medical journals the way I used to close-read ancient Greek poetry. I burned through horrifying amounts of money on vitamins and supplements. At night, my fears chased themselves. Would I ever get relief? Would I ever finish another book? Was long covid progressive?
It was a bad moment when I realized that any answer to that last question would come from my own body. I was in the first cohort of an unwilling experiment.
When vaccines rolled out, many people rushed back to “normal.” My world, already small, constricted further.
Friends who invited me out to eat were surprised when I declined. I couldn’t risk reinfection, I said, and suggested a masked, outdoor stroll. Sure, they said, we’ll be in touch. Zoom events dried up. Masks began disappearing. I tried to warn the people I loved. Covid is airborne. Keep wearing an N95. Vaccines protect you but don’t stop transmission.
Few wanted to listen. During the omicron wave, politicians tweeted about how quickly they’d recovered. I was glad for everyone who was fine, but a nasty implication hovered over those of us who weren’t: What’s your problem?
Friends who did struggle often seemed embarrassed by their symptoms. I’m just tired. My memory’s never been good. I gave them the resources I had, but there were few to give. There is no cure for long covid. Two of my friends went on to have strokes. A third developed diabetes, a fourth dementia. One died.
I’ve watched in horror as our public institutions have turned their back on containment. The virus is still very much with us, but the Centers for Disease Control and Prevention has stopped reporting on cases. States have shut down testing. Corporations, rather than improving ventilation in their buildings, have pushed for shield laws indemnifying them against lawsuits.
Despite the crystal-clear science on the damage covid-19 does to our bodies, medical settings have dropped mask requirements, so patients now gamble their health to receive care. Those of us who are high-risk or immunocompromised, or who just don’t want to roll the dice on death and misery, have not only been left behind — we’re being actively mocked and pathologized.
I’ve personally been ridiculed, heckled and coughed on for wearing my N95. Acquaintances who were understanding in the beginning are now irritated, even offended. One demanded: How long are you going to do this? As if trying to avoid covid was an attack on her, rather than an attempt to keep myself from sliding further into an abyss that threatens to swallow my family.
The United States has always been a terrible place to be sick and disabled. Ableism is baked into our myths of bootstrapping and self-reliance, in which health is virtue and illness is degeneracy. It is long past time for a bedrock shift, for all of us.
We desperately need access to informed care, new treatments, fast-tracked research, safe spaces and disability protections. We also need a basic grasp of the facts of long covid. How it can follow anywhere from 10 to 30 percent of infections. How infections accumulate risk. How it’s not anxiety or depression, though its punishing nature can contribute to both those things. How children can get it; a recent review puts it at 12 to 16 percent of cases. How long-haulers who are reinfected usually get worse. How as many as 23 million Americans have post-covid symptoms, with that number increasing daily.
More than three years later, I still have long covid. I still give my best hours to my children, and I still wear my N95. Thanks to relentless experimentation with treatments, I can write again, but my fatigue is worse. I recognize how fortunate I am: to have a caring partner and community, health insurance, good doctors (at last), a job I can do from home, a supportive publishing team, and wonderful readers who recommend my books. I’m grateful to all those who have accepted the new me without making me beg.
Some days, long covid feels manageable. Others, it feels like a crushing mountain on my chest. I yearn for the casual spontaneity and scope of my old life. I miss the friends and family who have moved on. I grieve those lost forever.
So how long am I going to do this? Until indoor air is safe for all, until vaccines prevent transmission, until there’s a cure for long covid. Until I’m not risking my family’s future on a grocery run. Because the truth is that however immortal we feel, we are all just one infection away from a new life.
‘we support all people with disabilities’ are you normal about people being disabled because of being fat
disabled people can absolutely be ableist. not just to themselves (i.e. "internalised ableism") but to other disabled people.
ableism is the default position in an ableist society and no one is immune from it. you just have to keep trying to learn and think and de-centre and open yourself to others' experiences. it's a continual process for us all.
After raising the price of COVID-19 vaccines more than four-fold this year, Pfizer CEO Albert Bourla told investors Monday that the company will also likely hike the price of its lifesaving COVID-19 antiviral treatment, Paxlovid, raising further concern about access and healthcare costs.
I don't understand why pedestrians are so eager to replace wheelchairs in fantasy worlds. no, in Pokemon wheelchair users wouldn't be riding Pokemon everywhere they would be using wheelchairs. wheelchairs are just fine. they don't need magical fantasy replacements
If someone says to you, "I don't see your disability!" The only proper response is, "Well I don't see your ignorance but it's clearly there!"
“if you take medication for that, you’ll be taking medication all your life!!” yeah, and?? bud, i already put on my glasses every morning. it’s like. a condition of mine, not a side hobby i’m pursuing irresponsibly.
sometimes I think having a physical disability means being constantly betrayed and disappointed by your community and nothing accentuated that quite like covid
*Sees someone on twitter arguing that DoorDash is necessary for the disabled because microwave food is too much to handle.*
...What. That seems absurdly specific.
There are a lot of reasons someone might not be able to microwave food. "I literally cannot get out of bed", "i need nutrients you can't just microwave", "my dumb brain has put up 18 billion barriers to try and stop me from eating and this is the loophole I have" "the microwave in this apartment is out of reach/not labeled properly/not ADA friendly in another way" "for x or y reason microwave food is a one way ticket to severe burns", etc. I found a lot of reasons someone might need DoorDash and I also found this cool article about food sharing in the disabled community and how the author had to rely on an abusive partner once because she was either in bed or barely able to crawl and they were among the few people bringing food.
Just saying, there's a reason disabled people have higher chances of food insecurity and there's a reason meal trains, meals on wheels, and other programs focus on bringing food to people in need and not just assuming "they have a microwave and money, why bother?". Sometimes you don't have a family or friends or mutual aid group to bring you meals when you can't even pop something in the microwave.
I think if you're not prepared for the answer, "I'm not working because I'm disabled," you shouldn't be asking people what they do for work. Sorry not sorry. It's not fair to ask the question and then get all flustered and weird when you get the answer.
So the Canada Disability Benefit (CDB) (which the gov't passed last year, Bill C-22), which was passed with the intent of "lifting people with disabilities out of poverty," finally got funded in the budget that was released today - and it's such fucking bullshit.
It's a maximum amount of $200/month ($2400/year)
You have to be approved for the Disability Tax Credit (DTC) to be eligible - something that advocates were specifically saying should not happen because it's so fucking difficult to get on. The CDB should be barrier-free.
Doesn't start until July 2025
It's such fucking bullshit. $200 a month? And not for another fucking year? Not to mention the DTC requirement? Are you fucking kidding me?? I'm so mad.
This CBC article about it can contains this quote - "Khedr estimates that roughly 1.6 million Canadians with disabilities are living below the poverty line. But Tuesday's budget says only 600,000 would be eligible for the new national benefit." This is because of the DTC requirement. Jesus Christ.
Anyway, Canadian folks, please for the love of god contact your MPs and tell them how awful this is. It needs to be more money, it needs to be enough to actually have an impact, and it needs to not require DTC eligibility.
I'm so mad.
i hate that it’s seen as ok for people to make fun of skin conditions
this includes skin conditions that are caused/exacerbated by poor hygiene btw
hey actually can we stop treating hair loss or absence in media like it’s either a huge joke or a horrible tragedy? please? because i’m getting really sick of hairlessness (whether partial or total) constantly being depicted like it’s unnatural and strange—especially when it comes to afab or feminine people, but also just in general! and this applies to short hair, too, or generally ‘weird’ haircuts, by the way.
stop using a person’s hair (or lack thereof) as the butt of your jokes or the basis of your tragedy. until mainstream media starts accurately and explicitly depicting people with conditions like alopecia (something which should be normalized but has been made shameful by the standards media and society perpetuates), it should not and does not have the right to decide the narrative of their lives.