ask me about my NF heacanons

I say this because IME, the vast majority of the time, these are "zero COVID" people who think that we should have locked down until COVID was completely eradicated and until every single person (including people with severe autoimmune disorders who were already not safe going outside because of other pathogens) was able to safely go to a crowded night club. Aka a thing that no government on the planet Earth did, that no candidate anywhere of any party is proposing, and that every medical organization has recommended strongly against. Because:

It shows a fundamental misunderstanding of how infectious disease works. Starting with the fact that we have eradicated a disease like this exactly once in human history. We're not even at Zero Bubonic Plague, let alone Zero COVID; does that mean we should act like the Black Death is still ongoing? These people love to act like the HIV-AIDS crisis is "over" (and appropriate slogans from it) because we have good effective drugs for keeping HIV-positive people healthy for decades and containing its spread, but there are still over a million new cases every year.

Lockdowns were psychologically damaging for most of the population, to the point that some people have suggested that the effects of the 2020 lockdown could be classified as a mental health pandemic, and likely had all sorts of consequences we're just beginning to see, like spreading online extremism from so many people being shut in with nothing to do but get lost in the wilds of the Internet. The idea that the vast majority of the population that is, when vaccinated and boosted, perfectly healthy going out in the world and resuming normal social activities, needs to still lock down forever because it's dangerous to a tiny minority... rather than our society be better at supporting that minority in being able to stay home.... makes no sense, especially given the high health cost of lockdowns. (As I've said before, it's funny how many of these people are the same people posting "mental health is as important as physical heatlh!" memes yet they think the fact that staying indoors for a year drove us all collectively a little insane should just be shrugged off.)

That's not even to go into the other costs of lockdowns: like how much lost education there was because of the inadequacy of Zoom school in most places, a thing every educator I know from elementary school through college has noticed, that the usual skills students would learn from the years they were in online school are significantly weakened or completely missing.

Should we do more to accommodate people who really cannot go out? Of course. Is it frustrating how every workplace showed that they are perfectly capable of doing what are pretty standard disability accommodations, and then tried to roll that back the second the majority of people were able to go back to in-person work and school and social lives? Yeah (though a lot of that is here to stay; way more jobs at least offer work-from-home, way more schools offer online learning, etc.) But the idea that everyone should still be locking down 4 years into the pandemic is just not supported by anything or anyone except for a very loud and very insular group of weirdos online - who also, IME, almost never have the particular disabilities or illnesses that actually result in you having a greater risk from COVID. They're nearly always other kinds of disabled people appropriating that. Though hopefully, you can see that "everyone needs to lockdown forever until zero covid" is a pretty clearly bonkers take coming from anyone.

I see a lot of people falling for this "but Biden's disastrous COVID policy" these people are putting out there who obviously don't agree with "zero COVID" and this is why you need to ask people what they mean when they say these things. Almost no one agrees with these cultish weirdos and that's for a reason! So don't take their word for it! Ask them what they mean! Even if you overall dislike Joe Biden, hopefully you can see why letting them demonize a politician over what is an extreme position that is not feasible and is not being proposed by anyone anywhere on the political spectrum in any country, is so very damaging. This is like raging against "Biden's animal rights policies" and it turns out the person is mad that Biden doesn't think they should be able to keep a great white shark as a pet.

You can have this position. But you have to understand that with this statement you are also saying it is acceptable for a certain percentage of people to die so everyone else can be free to keep spreading and contracting a deadly and permanently disabling preventable disease. I'm not saying this as a guilt trip to get you to mask or whatever. I'm saying that that is the cost. That is the on paper factual cost of life this way. That we are all accepting a risk of death and permanent disability for ourselves and others to eschew certain risk mitigation strategies. That is fine! There is no perfect solution. I don't have the answers for risk mitigation while also preserving the benefits of in school instruction with your peers. I certainly don't have answers for the mental health effects as I'm personally still dealing with them.

I just want to make sure we're on the same page so you understand what I'm about to say.

I do think you should have a little bit more empathy for the people who saw how disabled people, members of their community whether they have physical or other disabilities, were disregarded. How we were endangered and at risk of death simply because our lives were deemed worth less, and are clearly still deemed worth less, than our able bodied peers. How able bodied people were and are still given priority when it comes to COVID policy and healthcare.

We all make our own risk assessments and choices. But acting as if it's some subset of disabled people who don't have the physical disabilities affected, while also throwing mentally ill people under the bus and armchair diagnosing OCD, are the only ones vocally upset by how the world has treated COVID and COVID policy is just insulting and ableist.

A little more emphasis on making life better for disabled people and less emphasis on dismissing concerns by random members of the disability community.

Early on, when I struggled with anxiety over people not masking at all once restrictions were beginning to be lifted, my therapist told me that we all make our own choices about what risks we are willing to take. I make my choices, everyone else makes theirs. We mitigate our risk by wearing a mask and being vaccinated. Or we accept higher risk and choose not to do that.

But what we shouldn't do, is pretend like it's not a problem that the whole world is acting as if COVID is over and that all the people dying and contracting Long COVID are just little dust bunnies to be swept under the rug. That people who are still homebound and at risk are just afterthoughts. "Yes we should totally make things better for disabled people but they're such a small minority and the majority of the healthy people who aren't at risk like those disabled people matter more."

Us disabled people matter just as much as everyone else.

Some things people can do to help fight for that accessibility can find local disability advocacy organizations to support, organizations that seek to broaden telehealth access, various gig economy unions and efforts to improve their pay and benefits. Support expanding delivery of materials from your local libraries, community outreach, companion programs. A whole wealth of programs that don't get the funding and attention they need because disabled people are minorities.

I make it very clear in the OP that:

We should do more as a society to support people who really cannot leave the house and who are immunocompromised. We are not doing enough as a society.

You can support those things without supporting the very extreme measures that the social media "zero COVID" movement is suggesting, in the same way that you can support more buildings being accessible to wheelchair users without it meaning that people who can use stairs are no longer allowed to do so either.

This is very specifically about whether it is feasible to expect people who are fully vaccinated and boosted to behave like it is eternally April 2020: to have lockdowns go on forever, to be required to wear masks every time they leave the house.

I know plenty of people in the disabled community (again, I myself am disabled) who take issue with the idea I see on Twitter (again, primarily from people who make it very clear in their other posts that they are not homebound disabled people and/or immunocompromised, even if they have other disabilities) that we need to act like we are under lockdown forever in order to "support disabled people." A lot of these people are themselves homebound or immunocompromised. I've done stuff that Zero COVID conspiracists claim is "ableist" with friends who are immunocompromised!

You're trying to abstract this post to a general "listen to disabled people," "have compassion for disabled people," but there are a lot of ways we can do that; reasonable minds can disagree on what exactly that entails. And I'm not interested in doing a "motte and bailey" argument here that obscures what's actually being said.

What's being said is:

Do you agree with the "zero COVID" movement that in order to support disabled people, people who have been fully vaxxed and boosted need to continue to socially distance and wear masks whenever they leave the house? Do you agree with the idea that we need to continue to behave as if it is April 2020 until COVID is completely eradicated?

Do you?

If you don't, then congratulations! This post is not about you. In that case, it seems your main issue is with the tone of the argument - and for that, I'm sorry if it read like I was invalidating disabled people with legitimate concerns, but this comes from being a disabled person myself and one of numerous disabled people online who are sick to fucking death of a movement that very much matters to us and impacts our life being hijacked by people pushing extreme rhetoric. This means that people are less inclined to listen when actual disability rights issues come up. That's a problem!

If you do (agree that we all need to lockdown and mask until COVID is completely eradicated), then can you explain why you think that every health organization in the world, every infectious disease expert, even a lot of disability rights orgs are wrong about this? Can you explain why this needs to be done with COVID and not any other similar disease that is not yet eradicated (which is to say, every disease except smallpox)? I'm genuinely curious.

We should be masking for other respiratory illnesses, yes. We should be taking precautionary measures for infectious diseases like we already do such as washing hands, not sharing needles, preventing cross-contamination, etc. We can include wearing a mask to our illness prevention routine.

That being said, I want to talk a little bit about this: "And now, we live with the consequences of that. Which is accepting a percentage of people will die or become permanently disabled from a preventable illness despite the fact we know how to prevent it and could still try for herd immunity."

You're making it seem like it's an issue of society not being compassionate enough, but the problem is there is no way to not do this. Starting with that COVID just simply isn't a disease that is eradicable in the way smallpox was and polio could be (I recommend reading the reblogs of this post that explain that), but also because none of the public health measures we've done are foolproof. I was fully vaxxed and boosted (up to that point) and wearing masks every time I left the house when I got the omicron strain of COVID-19 in the spring of 2022. People can do "everything right" and still get it. It's not so much that we've "decided it's okay" so much as we didn't decide anything, we have no choice. The way you're using "preventable" above isn't really what people mean when they say "preventable disease" - that's the term used when people in underdeveloped countries die or are disabled by a disease where all that can be pretty much guaranteed not to happen with state-of-the-art modern medicine, either by them not getting it or it being cured quickly. That's just simply not true with COVID-19. We have vaccines and we have ways to manage symptoms, but no cure and no surefire way to ensure you'll never get it, or to ensure it won't affect some people more even with vaccination.

I do think a lot of that would be lesser if we could somehow get everyone to vaccinate, as vaccination does, at the very least, lessen the severity of COVID-19. (When I got it in 2022, multiple rounds of vaccinations and boosters into it, it wasn't much worse than getting a cold; I'm sure it would not have been the same had I caught it pre-everything, just looking at how it affected some of my friends who were unfortunate enough to contract it early in the pandemic.) I do think we absolutely should continue to mandate vaccines in as many place as possible and it's a problem that we don't, especially because the social pressure was likely forcing some people to vaccinate! But I also think that doomerist rhetoric about eugenics and so on doesn't really take into account how COVID-19 and similar diseases work, and to what extent we can decide not to accept a certain level of death and disability from it. To what extent it's even in our hands.

- The Schizophrenia spectrum

- Obsessive Compulsive Disorder

- Dyslexia, Dysgraphia, Dyscalculia, Dyspraxia

- Tic disorders

- Cerebral palsy

- Down’s Syndrome

- Bipolar disorder

- Epilepsy

- Personality disorders

- Dissociative disorders

I am a semi speaking autistic with high support needs, when strangers see me, they know I’m autistic.

I’ve often seen fully speaking autistics refer to me and other autistics like me as “just stereotypes”

But I’m not just a stereotype, and neither are other autistics like me.

We deserve to be seen too, we deserve to be seen as people with our own personalities.

Please don’t forget us

I don't really like ranking autism in terms of severity. Because I have the appearance of being high functioning because I can communicate(....do I want to actually is another thing communication does cause me meltdowns) however...I was in special needs, I struggle with daily tasks. I have meltdowns regularly. I struggle to put clothes on right. However the harm with functioning labels with regard to high functioning and such is meant to remove support for those of us who can communicate our discomfort

I know what this person is trying to say but this is just so tiring and exhausting.

You know what diagnosis is for? It’s for doctors to know how to treat you. It’s so you can get access to medicine and treatment. Self-dx is good for when you think, and I mean have a very educated guess, and you want your doctor to investigate.

Aiswarya Bulusu - [email protected]

(or)

The gender gap for Autism is much smaller in people who also have NF1, which is very interesting.

People with NF are also at a “higher risk” of having autism

like, i’m “high functioning” pretty much any way you slice it. i’m happily married, i drive myself, i pay my own bills, i don’t have any language difficulties, and so on. i also can’t hold a typical job because i have zero ability to focus on anything that doesn’t immediately enthrall me, i melt down over the slightest criticism, and i can’t regulate my facial expression or tone of voice properly so customers always read me as “rude”. i’m not an asset to capitalism in any way, shape, or form.