For Disability PRIDE Month - Its EXTREMELY Important To Remember That COVID Still Exists.

For Disability PRIDE Month - It’s EXTREMELY important to remember that COVID still exists.

It never went away, and it’s as dangerous as ever.

Here are some facts everyone should be aware of:

1) COVID has killed millions around the world (directly and indirectly - such as causing heart problems, for example, and then causing a lethal heart attack months later), and debilitated tens of millions, if not more, around the world in only a few years.

2) COVID can and often does cause long term effects which can last for months, years, or even a lifetime. These long term effects commonly include: fatigue, shortness of breath, loss of taste and smell, etc. - but there are countless other long term effects. Ongoing health issues that come from an infection is called “Long COVID” - and can range in severity.

3) Most people with Long COVID have reported being dismissed, and even gaslit or made fun of by family, and even medical staff. They have been told “it’s all in their head” or “not that serious”.

4) No age, gender, race, nationality, etc. is immune to COVID. ANYONE can get it. There are some groups of people, however, that are more likely than others to have more severe outcomes from an infection.

5) Herd immunity cannot be achieved with COVID, because the virus mutates every time it infects a group a people. This new mutation can dodge any immunity you have from a previous infection, and infect you again. Millions of people around the world have already had COVID multiple times - often different mutations/variants of the virus. The less often you and the people around you get COVID, the better.

6) While vaccines and boosters can prevent more severe illnesses and even death - you can still get COVID and Long COVID, even if you’ve been vaccinated. Vaccine efficacy only lasts a few months, and the vast majority of Americans are not up to date with their boosters.

7) COVID can wreck your organs and immune system, and make you more susceptible to other diseases and conditions - such as Pneumonia.

8) Since COVID is a relatively new virus, there’s still a lot not known about it; but the limited knowledge we do have on it is terrifying.

9) “Mainstream Media” doesn’t talk about COVID anymore, because society wants to pretend it doesn’t exist anymore. Lockdowns, masking, taking precautions, etc. was costing too much money and inconveniencing too many people - so the average person would rather just pretend it doesn’t exist, even though it does. Just because everyone around you thinks “COVID is over”, doesn’t mean it is. Don’t be fooled.

10) An experiment was done on lab mice: reinfecting them with COVID. By the 10th infection - all the mice were dead…

10 infections sounds like a lot, but if you’re 20 and you get 1 infection every year on average - you’re not likely to live past 30…

If you do, you’re almost guaranteed to have some from of Long COVID.

Please take COVID seriously, for yourself, and everyone around you…

Why do abled people always fucking suggest the most basic things to “fix” disabled people’s problems/disabilities and act like they know better than we do???

If you, a person who does not live with the disability you’re trying to “fix”, can think of a solution off the top of your head without any research, experience, or even trying to actually understand what we have tried and what we’re actually dealing with don’t you think that we might’ve already or are already trying that???

For me this comes most from my mother saying that I need to change my diet (even though I have so many sensory issues surrounding food and have tried and failed so many times), that I need to lose weight (ma’am I am trying), that I should try stretching (you know what I’ve tried that for years and guess what it just stretches my ligaments because I’m fucking hypermobile and it ends up causes me more pain), that I need to exercise more (I’m trying but I’m also limited by pain. Pain that keeps me from being able to exercise most of the time. Pain that usually gets worse when I try to exercise), that I should try to not use my mobility aids because I’ll become reliant on them (ma’am they help me. They are not hurting me. They are what keeps me able to do stuff you want me to be able to do. Why should I try to not use them???), and so much fucking more

Like seriously abled people stop pretending you know our bodies better than we do I promise you you don’t. Even doctors (as shit as they might be) are supposed to listen to us before they even start to make recommendations (yeah many don’t but they’re supposed to)

Our system is broken.  It is cruel.  It is dehumanizing, degrading, and it’s vile nature is so, so unnecessary.

We need universal healthcare today in America.  We needed it 40 years ago.  It’s cheaper, it’s simpler, it’s more efficient, it’s more effective and it is so, so, so much less cruel than what we have.

Additional sources/references:

Universal Healthcare Cost in America would be cheaper by trillions of dollars

The US has worse life expectancies than socialized healthcare countries

We have worse generalized healthcare results

We have the most expensive care

Our system is so cruel and unique that doctors from other countries literally can’t believe what happens here

I can’t tell you where or how to activate to help solve this.  There are politicians, groups, and activists pushing for this in so many ways.  I can tell you when, though.

Now.

I mean like...yes, it's okay to like kids' media regardless of if you're autistic or not. No, of course your sole argument for why it doesn't deserve mockery shouldn't be "but they might be autistic". But I don't think that means we need to or should deny that there is somewhat of a connection, or that this mockery is often rooted in ableism.

Like the autistic people who stick to or fixate on children's media are not some made up stereotype, that's a real thing and there are various reasons that can happen, such as those stories being easier to understand socially, cartoon faces having more exaggerated expressions, etc. And then there are things like comorbid intellectual disabilities and other developmental disorders.

I cannot tell you how many teenagers I knew in special ed loved media that was aimed at much younger audiences. Way more than in typical mainstream classes. That's not an accident. And it's not something we should shy away from accepting or try to distance ourselves from. Like yeah of course, it's not all of us. But if you want to seriously discuss an issue of judging people for not acting how they're expected to with regards to their age, you can't deny the role of ableism against developmental disorders.

Why the fuck is it so hard for able bodied people to get their heads around the fact that specifically physically disabled people are not actually accommodated most of the time?

Whether it be the inaccessibility of a building due to stairs, heavy non auto doors, ramps that are too steep, broken elevators or just non existent elevators, etc the list goes on and on. Or now public spaces that let’s say are otherwise perfectly accessible are now inaccessible to so many people because so many people refuse to wear a fucking mask when it would cause then no harm (maybe just a bit of sweat) to wear one.

The fact that abled people don’t see just how fucked up and inaccessible the world is blows my fucking mind. Just because someone “can” do something or go somewhere doesn’t mean they should have to do that or that it’s safe for them to do so. Like sure I can do stairs but holy shit by the time I’m at the top I’m in so much pain and I feel like I’m gonna pass the fuck out man.

Bottom line, the world is really fucking inaccessible and that needs to be fixed. Physically disabled people’s voices need to be listened to and not talked over by ableds who think they know what’s best for us or who think the world is perfect as it is

It's Disability Pride Month!! Let's talk about POTS!

Hello beautiful people. Since it's Disability Pride Month, I wanted to talk about my disability. I have a condition called POTS. It stands for Postural Orthostatic Tachycardia Sydrome, which is a very long name, and you can see why we just say POTS. Essentially, it means that when I change position or stand up, my heart rate gets too high. It is normal for your heart rate to go up when you change positions. But what makes POTS different is it changes too suddenly and much higher than average. The National Institutes of Health defines that a person with POTS has "an increase in heart rate of 30 beats/min or more when moving from a recumbent to a standing position that lasts more than 30 seconds". Which on its own doesn't sound all that bad. I would be a much happier human if that's all it was. However, POTS comes with its own host of symptoms. That swing in heart rate can cause dizziness, lightheadedness, blurred vision, and sometimes fainting. Other symptoms of POTS include:

Exercise intolerance

Headaches

Nausea

Fatigue

Anxiety

Dry mouth

Excess thirst

Leg pain

Blood pooling

Brain Fog

Swollen Extremities

Sleeping problems

Bladder problems

Digestion issues

Tremors

Shortness of breath or chest tightening

Memory issues

Poor temperature regulation

Chronic dehydration

Neuropathic pains

Increased sweating to the extremities

Loss of appetite

Light sensitivity

Dry eyes

Heart palpitations

Chest pain

Cold extremities due to poor blood flow

Heat intolerance

Hypovolemia (low blood volume)

And probably more that I've missed! Doesn't sound all that fun, and trust me, it isn't! POTS is a condition under the larger umbrella of Dysautonomia. There are several different types of dysautonomic conditions, POTS is only one of them. Here are some fun facts about POTS:

POTS effects around 0.2% of the world's population

It is most common in females, 75 to 80% of all patients are female

Though it can be diagnosed at any age, it is most commonly diagnosed between the ages of 15 and 25 (I was 19 when I got diagnosed!)

There is no cure for POTS and it's a chronic illness

Some teenagers will outgrow the condition in their 20s

The average time to diagnosis is 5 years and 11 months (took me almost a year, luckily)

According to Dysautonomia International, 25% of POTS patients are so disabled they cannot work or attend school

There is no singular cause for POTS, and many patients will likely not know what caused their condition

Research on POTS is incredibly sparse, making advocacy, treatment, and diagnosis even harder

The usual recommended treatment is increased fluid intake, increasing salt intake, wearing compression stockings, raising the head of the bed to conserve blood volume, reclined exercises like rowing, recumbent bicycle, or swimming, and a healthy diet

While there is no FDA approved medication for POTS, some medications such as beta blockers can be used to aid the condition

Though the heart is directly involved, POTS is not technically a heart condition. It is technically a nervous system disorder stemming from the autonomic nervous system

There's lots to be said about POTS! I don't think I could fit it all in one post if I tried. But if you made it this far into the post, thank you for taking the time to learn about it! Awareness is key, and the more people that know about the condition, the better we are. Happy Disability Pride Month!!