#the advocacy

[many-sparrows]

Howdy folks, the Senate will be considering a major resolution blocking arms to Israel. This is huge and historic; it would block government contracting and about $20 billion in arms and support. This is an uphill battle, PLEASE urge your senators to support S.J.Res114-115. This is maybe the most important piece of legislation relating to Palestine that we have ever gotten and we must seize this opportunity.

This doc has information on the resolutions and their process, as well as sample messages and a phone script you can use. Please, use this moment to hear witness for your neighbors.

[crippledpunks]

i wanna say fuck you to anyone who shame disabled, chronically ill & neurodivergent people, especially homebound folks, for "spending too much time on their phone/on the internet/etc." when it's the only (Somewhat) accessible way for them to experience the world. many people don't get to get out much even if they want to because of their disabilities. shaming someone for trying to connect with the world, make friends and engage with hobbies in ways that are accessible to them is beyond cruel and unnecessary

[fallenstarcat]

sometimes i feel like people forget autism is a disability. and that’s not a bad thing! i’m all for disability acceptance, im proud of my disabilities. but i feel like we forget autism can hurt.

it hurts that i have to put more time and energy into socializing than others.

it hurts when i need to move so bad, usually cause im overwhelmed by either my surroundings or emotions, that i thrash and hurt myself.

it hurts that i cant be in places that are too loud or too bright, which on bad days can be as simple as a small, quiet noise or dim lights.

it hurts that i struggle to tell when im hungry, thirsty, tired, etc. so i can’t properly take care of myself. it doesn’t help my insomnia and i get very nauseas and get UTIs.

i 100% believe in autism acceptance. i don’t want a cure. but i also want us the acknowledge that it can hurt. it doesn’t mean my entire life will hurt, but some parts will. and i want a community where we can see both sides, see the hurt, and celebrate it anyway.

[neuroticboyfriend]

IM GOING TO CRY THEY MIGHT INCREASE THE SSI ASSETS LIMIT TO $10,000.

it's a bipartisan bill too! and for anyone unaware, people on SSI (which is different from SSDI), can only have $2,000 in assets (unless they have an ABLE account, which comes with its own rules). this assets limit has been in place for FORTY YEARS and is a giant part of why being on SSI keeps people incredibly impoverished.

i've also heard they might remove the marriage penalty but i don't have the spoons to read or explain it so someone else please add on!

this is huge! please spread the word and do what you can to help ensure this happens!

[random-schit]

Anyway normalize stutters, stilted speech, flat affect, monotone speech, volume control issues, nonverbal communication devices, voice modulators, speech impediments, lisps, oral deformities.

Normalize "abnormal" speech patterns. Normalize lack of eye contact, normalize ticking, normalize emphasis on different syllables. Normalize "Inappropriate" emoting, especially when it's a stress response.

Normalize verbally processing thoughts, external system communication, non- aggressive interaction with hallucinations or delusions.

Normalize Echolalia, "TV Talking", vocal stimming, parroting, "Baby talk" as a way to self soothe.

[spookietrex]

[whileyoureinschoolidothisallday]

I have nothing but bad news for y'all

We were supposed to have until April to leave comments, but the cdc has officially ended the 5 day isolation period as of today, March 1st, 2024.

They're saying as long as it's been 24hrs and your symptoms are improving, you're good.

Nothing about covid has changed. Medical professionals are obviously slamming this decision. All this does is make it even more difficult to avoid long covid, because now workers will have to fight for sick days and time off they already barely have just to fucking heal from an organ damaging virus.

Idk what to say for this one.

[mxmorbidmidnight]

So much of what society treats as a joke is just mocking disability. Their idea of lazy is a disabled person trying to survive, whether that be living with their parents as an adult or using pre prepared food. Cringe culture is based entirely around mocking neurodivergent people and their interests. Symptoms and characteristics of disability such as urgency issues, drooling, tremors, tics, strabismus and speech impediments are used as cheap punchlines.

In children’s tv shows disabled characters such as those with speech impediments are treated as a joke, with symptoms of disability being portrayed as synonymous to stupid.

This idea is being taught from a young age in the media and it’s engrained into our language and culture. This goes beyond jokes, it contributes to the alienation of people with disabilities.

Once you start noticing these things you realise how constant and normalised it is.

Reducing an entire person to a punchline is wrong. Using a disability symptom as an insult is wrong. It’s disturbing how normalised it is to not treat people with basic decency and respect.

[uncanny-tranny]

[vizthedatum]

An apparently unpopular opinion: disabled people can have and do their hobbies. They deserve to have fun. They deserve to live their lives.

Their inability to do some things (like work, for example) does not mean they should be judged for… idk hanging out with their friends or to going outside. After all, having interests outside of work is often essential to our mental and physical health OUTSIDE of our disability.

And also *you might want to sit down for this* disabled people know what’s disabling for them (unless they people-please or push through due to necessity or survival of some sort). Disabilities don’t have to be visible or persistent to be disabling.

So yeah - my declaration: if an activity you want to do feels good and you’re able to do it, then do it. REGARDLESS OF YOUR DISABILITY WITH OTHER THINGS.

[lightning-system]

As a medium/lower support needs autistic who works with young higher support needs autistic:

We all matter. We all have the same diagnosis. We all deserve to be treated with dignity and respect.

But we are not the same.

I can mask and might be seen as 'odd' or 'weird' in public. The students I work with are seen as 'dangerous' and 'practically little kids'.

I can go to university and work with accommodations. The students I work with likely will never live independently and a few might find jobs that support them but still pay them less than an abled worker.

I have full control of my finances. The students I work with aren't allowed to make independent financial decisions, even if capable.

If I say 'no,' I'm making a choice. The students I work with can't say 'no' without being labeled as defiant and difficult.

I can feed myself, bathe myself, and take care of myself with extreme challenges. The students I work with are unable to take care of themselves without high levels of support/one on one support.

I had an IEP in high school but was mainstreamed in classes. The students I work with take separate classes and some rarely get to interact with their abled peers.

Our experiences are fundamentally different. Higher support needs autistics will experience a specific type of ableism I never will, and can never fully understand.

Lower support needs autistics need to stop saying we understand what higher support needs autistics are going through and then present autism as only being disabling because of society/lack of acceptance because that is dangerous. We need to stop saying every autistic person is capable of everything if given the right support because that leaves out huge parts of our community who will never be able to do certain things, regardless of support.

We are worthy of existence regardless of our abilities.

Autism is a spectrum. It is not the same for every autistic person. Autism acceptance and advocacy has to come with accepting, acknowledging, and listening to our higher support needs peers.

[ineffectualdemon]

Disability Pride month let's not forget about the people in our community with intellectual disabilities!

I just found out about the Stay Up Late campaign to advocate for people with intellectual disabilities to have the right to go out in the evening and not have to be in bed by 8pm

I learned about it from this video:

And I found the website for the campaign which is here:

Let's support all members of our community

[crippledpunks]

chronic fatigue weaves its way into everything. people love to tell disabled people they'd love to rest as much as we do, but they fail to understand how tired we are while we rest. we are not relaxed, we are generally pretty miserable, either from pain, irritability, or fatigue- which bleeds into every aspect of your life. being too fatigued to get up off of the couch means that you're too fatigued to get to the cupboard to pull out pans to attempt to start cooking.

the steps hidden within steps that are required to do a lot of tasks related to being a "functioning adult" are daunting, there are often way too many steps necessary to make "Simple" foods or do "simple" chores for disabled people to accomplish these tasks. chronic fatigue often means that even waking up from a nap or night's rest requires time to adjust to and power through

waking up is a process for me. im often no more alert and awake hours after i've woken than I am right after doing so. caffeine does not help fatigue- at least not at safe doses, for me, anyways. many days the act of moving from my bedroom to my living room is too much. taking dishes to the sink can be too exhausting. i have began falling asleep in front of the kitchen counter while standing because i realize the amount of steps required to clean the counters, or do the dishes, or prepare a meal that all of my energy instantly bleeds away

it's okay if you feel this way too. i have been dealing with chronic fatigue my entire life and it cost me my best paying job. i lost my ability to work because of it. it's not just you being "sleepy", you are genuinely too exhausted to function. you do NOT have the energy levels other people do, and that's okay. it's okay to let yourself be tired sometimes and address that instead of trying to pretend you're not tired.

i wish you good luck. you are loved

[infiniteglitterfall]

know someone who enjoys horror stories? share this one! it's true!

hahahahahahahahahaha aarrggghhhhhhhhhh 3,000,000 deaths due to COVID-19 last year. Globally. Three million. Case rates higher than 90% of the rest of the pandemic. The reason people are still worried about COVID is because it has a way of quietly fucking up your body. And the risk is cumulative.

I'm going to say that again: the risk is cumulative.

It's not just that a lot of people get bad long-term effects from it. One in seven or so? Enough that it's kind of the Russian Roulette of diseases. It's also that the more times you get it, the higher that risk becomes. Like if each time you survived Russian Roulette, the empty chamber was removed from the gun entirely. The worst part is that, psychologically, we have the absolute opposite reaction. If we survive something with no ill effects, we assume it's pretty safe. It is really, really hard to override that sense of, "Ok, well, I got it and now I probably have a lot of immunity and also it wasn't that bad." It is not a respiratory disease. Airborne, yes. Respiratory disease, no: not a cold, not a flu, not RSV.

Like measles (or maybe chickenpox?), it starts with respiratory symptoms. And then it moves to other parts of your body. It seems to target the lungs, the digestive system, the heart, and the brain the most.

It also hits the immune system really hard - a lot of people are suddenly more susceptible to completely unrelated viruses. People get brain fog, migraines, forget things they used to know.

(I really, really hate that it can cross the blood-brain barrier. NOTHING SHOULD EVER CROSS THE BLOOD-BRAIN BARRIER IT IS THERE FOR A REASON.) Anecdotal examples of this shit are horrifying. I've seen people talk about coworkers who've had COVID five or more times, and now their work... just often doesn't make sense? They send emails that say things like, "Sorry, I didn't mean Los Angeles, I meant Los Angeles."

Or they insist they've never heard of some project that they were actually in charge of a year or two before.

Or their work is just kind of falling apart, and they don't seem to be aware of it.

People talk about how they don't want to get the person in trouble, so their team just works around it. Or they describe neighbors and relatives who had COVID repeatedly, were nearly hospitalized, talked about how incredibly sick they felt at the time... and now swear they've only had it once and it wasn't bad, they barely even noticed it.

(As someone who lived with severe dissociation for most of my life, this is a genuinely terrifying idea to me. I've already spent my whole life being like, "but what if I told them that already? but what if I did do that? what if that did happen to me and I just don't remember?") One of its known effects in the brain is to increase impulsivity and risk-taking, which is real fucking convenient honestly. What a fantastic fucking mutation. So happy for it on that one. Yes, please make it seem less important to wear a mask and get vaccinated. I'm not screaming internally at all now.

I saw a tweet from someone last year whose family hadn't had COVID yet, who were still masking in public, including school.

She said that her son was no kind of an athlete. Solidly bottom middle of the pack in gym.

And suddenly, this year, he was absolutely blowing past all the other kids who had to run the mile. He wasn't running any faster. His times weren't fantastic or anything. It's just that the rest of the kids were worse than him now. For some reason. I think about that a lot. (Like my incredibly active six-year-old getting a cold, and suddenly developing post-viral asthma that looked like pneumonia.

He went back to school the day before yesterday, after being home for a month and using preventative inhalers for almost week.

He told me that it was GREAT - except that he couldn't run as much at recess, because he immediately got really tired. Like how I went outside with him to do some yard work and felt like my body couldn't figure out how to increase breathing and heart rate.

I wasn't physically out of breath, but I felt like I was out of breath. That COVID feeling people describe, of "I'm not getting enough air." Except that I didn't have that problem when I had COVID.) Some people don't observe any long (or medium) term side effects after they have it.

But researchers have found viral reservoirs of COVID-19 in everyone they've studied who had it.

It just seems to hang out, dormant, for... well, longer than we've had an opportunity to observe it, so far.

(I definitely watched that literal horror movie. I think that's an entire genre. The alien dormant under ice in the Arctic.)

(oh hey I don't like that either!!!!!!!!!) All of which is to explain why we should still care about avoiding it, and how it manages to still cause excess deaths. Measuring excess deaths has been a standard tool in public health for a long time.

We know how many people usually die from all different causes, every year. So we can tell if, for example, deaths from heart disease have gone way up in the past three years, and look for reasons. Those are excess deaths: deaths that, four years ago, would not have happened. During the pandemic, excess death rates have been a really important tool. For all sorts of reasons. Like, sometimes people die from COVID without ever getting tested, and the official cause is listed as something else because nobody knows they had COVID. But also, people are dying from cardiovascular illness much younger now.

People are having strokes and heart attacks younger, and more often, than they did before the pandemic started. COVID causes a lot of problems. And some of those problems kill people. And some of them make it easier for other things to kill us. Lung damage from COVID leading to lungs collapsing, or to pneumonia, or to a pulmonary embolism, for example. The Economist built a machine-learning model with a 95% confidence interval that gauges excess death statistics around the world, to tell them what the true toll of the ongoing COVID pandemic has been so far.

Total excess deaths globally in 2023: Three million.

3,000,000.

Official COVID-19 deaths globally so far: Seven million. 7,000,000. Total excess deaths during COVID so far: Thirty-five point two million. 35,200,000.

Five times as many.

That's bad. I don't like that at all. I'm glad last year was less than a tenth of that. I'm not particularly confident about that continuing, though, because last year we started a period of really high COVID transmission. Case rates higher than 90% of the rest of the pandemic. Here's their data, and charts you can play with, and links to detailed information on how they did all of this:

Here's a non-paywalled link to it:

https://archive.vn/2024.01.26-012536/https://www.economist.com/graphic-detail/coronavirus-excess-deaths-estimates

Oh: here's a link to where you can buy comfy, effective N95 masks in all sizes:

Those ones are about a buck each after shipping - about $30 for a box of 30. They also have sample packs for a dollar, so you can try a couple of different sizes and styles.

You can wear an N95 mask for about 40 total hours before the effectiveness really drops, so that's like a dollar for a week of wear.

They're also family-owned and have cat-shaped masks and I really love them. These ones are cuter and in a much wider range of colors, prints, and styles, but they're also more expensive; they range from $1.80 to $3 for a mask. ($18-$30 for a box of ten.)

[chronicsymptomsyndrome]

Can we please for the love of god stop telling teenagers they’re too young to have aches and pains. Can we please stop being dismissive about these things. Fakeclaiming is disgusting period, but it is exponentially harmful to youth. Just because you didn’t start hurting until your 20s or 30s or 40s doesn’t mean every teenager complaining of chronic pain must be lying. I learned the hard way that if kids are invalidated enough about this, they will just learn to accept constant pain as a fact of life. And then they will need surgery they can’t afford in ten years bc it turns out constant pain is NOT a fact of life. At any age.

p.s. same goes for mental health