starrynightsdelight

[starrynightsdelight]

what abled ppl think is a massive problem for disabled folks: 13 year old on the internet faking something

what is actually a massive problem for disabled folks: "well you don't LOOK disabled, are you sure you're not faking? I'm not giving you accommodations until you PROVE you're not faking. Please give me, a stranger, your medical info and explain your condition to me in detail so I know you're not faking and only then will I respect or take you seriously"

[starrynightsdelight]

Kinda wild how most people generally recognize that the "too sick to go to school, too sick to watch tv/play games" mindset our parents had was bullshit but still impose essentially the exact same rules on disabled adults and scrutinize them for enjoying low-energy hobbies while being too fatigued or in pain to work a full time job (or any job at all)

[starrynightsdelight]

you have gotttt to communicate your gripes with chatgpt and ai without being demeaning to people who yknow. actually can't write a 600 word essay or write a grocery list. and I'm NOT writing this as a defense for using ai. it's not even primarily disabled people using ai, its prevalent among the general public and I know that your "intended target" is people who use it because its the path of least resistance. but man your rhetoric sucks and I don't know why you feel so comfortable tying intellectual ability with inherent worth! I don't know why you're so comfortable leaving people with intellectual disabilities in your warpath or why the thousands of ppl that shared those posts do also. It's so egregious to me. Yeah ai sucks it's not a good tool in general and if you use it to not actually participate in your own education you suck. yeah. we agree. struggling to write an essay, is not something worthy of demeaning.

[starrynightsdelight]

if you didn’t realize, ableism is actually bigotry and systemic ableism and inaccessibility are really oppression and it’s not something disabled people brought on ourselves by having bodies&minds that you think are inferior and therefore not worth fighting for. disabled people’s lives and wellbeing matter. we don’t have to earn our worthiness by doing “enough” to deserve a good life. nobody does.

[starrynightsdelight]

Like it's important to remember that you can be "high functioning" and manage a job and live independently and still be miserable and have a low quality of life. Just like you can be "low functioning" and unable to work and need a lot of care and assistance with daily activities and still live a life you find to be meaningful and enjoyable. A lot of people tend to assume that the more care and accommodations you need to live your life, the more unhappy you must be, but quality of life is a lot more nuanced than that

[starrynightsdelight]

Hey, here’s a concept. What if we stopped saying “but autistic people CAN do all those things” (erasing high support needs) and instead started saying “not being able to do those things doesn’t impact someone’s value as a person nor does it make it okay to commit eugenics”.

[starrynightsdelight]

people gotta stop making AUs where a physically disabled character has their disabilities erased. shit is fucking weird.

"here's my AU where scrumpy mc doodleson works as a barista oh and he has his arm because this is a happy au and physically disabled people and happiness cannot co-exist"

[starrynightsdelight]

I fucking hate that the general response to RFK Jr's eugenist take on autistic people is "autistic people do pay taxes, autistic people do work, autistic people do date!"

Some autistic people don't and that shouldn't make them less worthy of life. Some autistic people do need constant help and support and that shouldn't make them less worthy of life.

Once again we're falling in the right wing trap of :

They make a hateful, fascist statement

Instead of focusing on the fact that it is hateful and fascist we try to show them that they are factually wrong

We throw our own allies and the most vulnerable of us under the bus in the process

We legitimise an only slightly less hateful, fascist view as we go

They have completed their goal of making us accept the still hateful, fascist second version, hurrah. What a victory.

Right now what we're getting to with that is that autistic people who can work and pay taxes are okay, and the others aren't. Fuck this shit.

Same thing happens with the people who are being deported ("they have a visa!", "they didn't even have a criminal record!" -> even if they didn't have a visa, even if they did have a criminal record, deporting them and detaining them in what's essentially a concentration camp wouldn't be okay, you absolute tools of fascism.)

[starrynightsdelight]

idk if i can really explain how bad disability rights is being attacked to you all it's like catastrophically bad

[starrynightsdelight]

chronic pain isn’t just dealing with pain

-it is choosing between making food or taking a shower

-it is having to take meds on an empty stomach and dry heaving through a morning

-it is knowing that you can’t possibly balance your school/work, social life, and physical fitness all at the same time

-it is barely being able to handle one

-it is years of having to miss out on years of events and parties and being dubbed “antisocial” because of it 

-it is spending 99% of your time in pain and alone 

it is so much more than “just pain”. I think abled people forget that chronic pain really does permeate every aspect of a person’s life. 

[starrynightsdelight]

april is sjögren’s disease awareness month

sjögren’s is one of the most common causes of dysautonomia.

sjögren’s is a chronic systemic autoimmune disease that is commonly considered 'just' a disease of dry eyes and dry mouth.

and this characterization of sjögren’s being just dry eyes and dry mouth (although those alone can be very disabling!), is wrong.

in the US alone, it is estimated that 4 million people have sjögren’s disease (millions more than lupus!), and 75% of those patients are undiagnosed. and a lot of this is because too many people only think of sjögren’s as dry eyes and dry mouth. a LOT of patients do not complain of dryness, or only have dryness after other major damage.

sjögren’s disease can affect anyone at any age. it can harm the nervous system, eyes, ears, skin, muscles, joints, mouth, teeth, brain, liver, gut, lungs, and way more. it can cause chronic pain, fatigue, brain fog, infections, loss of vision or hearing. sjögren’s is NOT just dryness. it can be profoundly disabling and it can fucking kill you.

and there is no real diagnostic criteria. the guidelines were designed for research purposes only, and a lot of patients test negative based on those guidelines. the blood test for sjögren’s, by itself, is negative in 30%-40% of patients who have sjögren’s.

which is especially fucking bad since sjögren’s patients are 40 times more likely to develop cancer of the lymph nodes, or lymphoma. sjögren’s patients are more likely to have strokes, heart attacks, miscarriages. sjögren’s patients often have or develop another disorder of the immune system, like another autoimmune disease.

sjögren’s is everywhere. it is not curable and it is not taken seriously enough. it can cause major problems, it can be deadly, it can be monitored, and it can be treated.

dysautonomiainternational.org

sjogrens.org

vimeo.com/dysautonomia

vimeo.com/819203862

[starrynightsdelight]

The disabled people who can't work at all aren't "lucky" that they don't have to, just like the disabled people who are forced by circumstances to work despite severe symptoms aren't "lucky" that they can... Instead of idealizing one of two equally challenging situations, what about a little solidarity and compassion?

[starrynightsdelight]

I know I'm preaching to the choir but like. You know you can wear masks for other sicknesses. Not just covid. If you have the flu or a cold or a stomach bug you can still wear a mask to help prevent the spread of it to others if you insist on going out! I just think it's the polite thing to do

[starrynightsdelight]

Class 1 recall on Tostitos. (Class 1 means they can kill you if consumed.)

[starrynightsdelight]

A useful resource for those interested in how screen-readers handle special characters

[starrynightsdelight]

"Two researchers in the US and Australia have discovered important mechanisms that prevent B cells from attacking the body’s own tissues in autoimmune diseases like arthritis, lupus, and multiple sclerosis—and in the process have won a prestigious prize.

Normally, the body’s immune system protects us from viruses, bacteria, and foreign substances. However, in autoimmune diseases, the immune system starts attacking tissues in the body instead.

Researchers had long tried to discover the cause of autoimmune diseases. But, Christopher Goodnow and David Nemazee, independently of each other, adopted a new approach.

They asked why we do not all develop these diseases. Their focus was on B cells which, together with white blood cells and T cells, are the building blocks of our complex immune system.

“They have given us a new and detailed understanding of the mechanisms that normally prevent faulty B cells from attacking tissues in the body, explaining why most of us are not affected by autoimmune diseases,” says Olle Kämpe, member of the Royal Swedish Academy of Sciences and chair of the Crafoord Prize committee that awarded the pair 6 million Swedish kronor ($600,000).

Neutralize B cells

In recent years, physicians have started to experiment by using existing drugs to neutralize B cells for patients with severe autoimmune diseases, including lupus, rheumatoid arthritis, and multiple sclerosis, which has proven to be very effective at improving their quality of life.

Thanks to this year’s Crafoord Prize Laureates, we have gained fundamental new knowledge about what is happening in the immune system during autoimmune disease attacks.

“This also paves the way for development of new forms of therapies that eventually can cure these diseases—or might prevent them in the future,” said one professor of clinical immunology at the Royal Swedish Academy of Sciences...

More details from the video, since the article glosses over the particulars:

"The laureates discovered what is now called B cell tolerance.

When B cells develop in the bone marrow, not all of them are perfect. To remove the faulty ones, a mechanism starts, in which defective cells are programmed to destroy themself through apoptosis.

The laureates discovered two new mechanisms that are used if some of the bad cells are left. Re-editing, where the immune system alters the combination of receptors, and anergy, that silences B cells with self-reactive receptors.

The laureates were able to demonstrate that these mechanisms sometimes fail. This means that faulty B cells can cause an attack on the body's own tissues – leading to autoimmune diseases.

Thanks to the laureate’s discoveries, doctors like Anders Bengtsson soon felt able to start treating patients with lupus, arthritis, multiple sclerosis, and many other autoimmune diseases, with medicines that eradicated B cells.

Anders Bengtsson: "I'm very happy that B cells has gotten so much attention because of the laureates. I have seen my patients getting so much better and getting a better life."

Autoimmune patient: "Today, I feel very good. I really have hope in the research that it will revolutionise things and perhaps even cure it all. That’s what I want, hope for, and believe in.""

-Article via Good News Network, April 6, 2025. Video via The Royal Swedish Academy of Sciences, January 29, 2025.