Juli Baumler

Anyway a great way to radicalize people is for them to realize that you just abandoned their chance at being able to access and afford health care because you didn’t like waiting in line at the airport.

Abraham: “God, you can’t wipe out an entire city if there’s even a few innocents, I will literally fight you!”

Senate Democrats: “Well, I guess if it doesn’t impact me, I’m okay with all the poor dying.”

He owned the biggest factory in Chicago. I don't think the financial pressure of "skilled immigrants want to work for me because they think I'm Norwegian like them, but I'm actually Danish" is anything but 1800's tech bro-dom.

That said, lots of people did and do Americanized their names to survive

Biden could have kneecapped the entire right wing grift economy by actually empowering the FDA to do what they are supposed to be doing

Men have really gone down hill. They don't give you actually hot stock tips just for letting them buy you dinner anymore.

(Me reflecting on the difference between my life and my badass great aunts')

A lot of the "Ellis Island" involuntary name changes show up on the ship's manifest, so it's probably some questionably-literate ticket seller who is to blame.
Having been a questionably-literate ticket seller in a room full of questionably-literate ticket sellers, this seems likely.

"3 vowels in a row is too fucking many. Imma drop one." - my great-grandfather except he said it in colloquial late 1800's Bayrisch.

"After A/B testing, -son is better for business than -sen" - my mom's great-grandfather except he said it in late 1800's business English

And people changed their name voluntarily (and probably blamed others if family members got upset).

Also, much of European immigration in that era was from countries and cultures where spelling was in the process of standardizing and/or last names rather than patronymics or farm names were becoming a thing.
You can't be named Hans (of) GoodFarm if you don't live at GoodFarm anymore!

all discourse aside, there is one machine with consciousness. it's printers. they are alive and conscious and they hate you and they'd take your arm clean off if you let them. never trust a printer.

I firmly believe in the Netherlands solution in residential areas: every crossing is a speed bump. The sidewalk does not come down to meet the road; the road goes up and over the sidewalk. If you blow out your tires doing 40 mph over them, well, slow the fuck down.

There is a difference between speaking honestly and trauma dumping.

Authenticity is showing up as your whole self.

Telling the truth about how you feel, what you’ve lived, what you need.

Authenticity is relational.

It builds connection.

It doesn’t bypass boundaries.

A thread 🧵

This immediately made me think of @deblkel.bsky.social !

31 Days of EDS & HSD – Day 31: Thank You For Raising Awareness

Thanks for letting me blather. This month I am participating in 31 Days of EDS and HSD social media challenge and the Walk and Roll challenge to raise money for the Ehlers-Danlos Society. You can donate on Fundraise or Facebook. You…

31 Days of EDS & HSD – Day 30: The Moment I Felt Seen

Today's prompt is "A time when someone truly understood your condition, whether a doctor, friend, family member, or stranger." This prompt really highlights some of my frustrations with both these prompts and the messaging from the…

31 Days of EDS & HSD – Day 29: Celebrate The Community

Today's prompt is to "tag a fellow zebra who inspires you." First, I really hate the way the Ehlers-Danlos Society has encouraged the EDS community in taking over "Zebra" from the larger rare disease community. And it's particularly egregious…

31 Days of EDS & HSD – Day 28: My Biggest EDS Learning Moment

Today's question is "What’s something that changed how you manage your condition?" I try to change and adapt all the time, but I think the biggest change was when a physiatrist used ultrasound to look at my hip joint and was able to see…

31 Days of EDS & HSD – Day 27: The future of EDS and HSD

The prompt for today is "what do I hope will change in the next 10 years?" I hope that the HSD disappears as a diagnosis, because there is no useful distinction. People with hEDS and HSD have the same range of troublesome symptoms. Some…

31 Days of EDS & HSD – Day 26: Words To My Younger Self

"Don't Z-sit." "Yes, you are really injured." This month I am participating in 31 Days of EDS and HSD social media challenge and the Walk and Roll challenge to raise money for the Ehlers-Danlos Society. You can donate on Fundraise or…

31 Days of EDS & HSD – Day 25: The Best Advice I’ve Received

Honestly, I think the best advice I've received about EDS is that if you've seen one EDS patient you've seen one EDS patient. And I mostly say that because some of the worst advice I've seen has been from other hEDS patients who assume…

31 Days of EDS & HSD – Day 24: How I Advocate

Mostly I advocate by being open about what I have and being involved in my local EDS groups and other disability groups. My local EDS support groups: The Eugene group Eugene Ehlers-Danlos & Hypermobility Support and Awareness Our Discord Our Facebook…

31 Days of EDS & HSD – Day 23: My Hope For Research

My hope for research is to improve diagnosis and  screening so we can do early intervention. I know that most of my pain as an adult is due to unaddressed childhood instability and past injuries that didn't heal properly. I only started…

31 Days of EDS & HSD – Day 22: My Dream Medical Appointment

I don't dream of medical care. Of course I want quality care, such as this definition from WHO: effective by providing evidence-based health care services to those who need them; safe by avoiding harm to the people for whom the care is…

31 Days of EDS & HSD – Day 21: Barriers To Care

In general, I think one of the biggest barriers to care for people with connective tissue disorders is medical professionals who don't feel empowered to act. hEDS and HSD are clinical diagnoses because the genes involved have not yet been identified.…

31 Days of EDS & HSD – Day 20: My Medical Must-Haves

So, of course I need my mobility devices (which shouldn't really count as medical but you need a doctor and a PT to get them prescribed in our system.) Beyond mobility, I need the equipment for managing my lymphadema. A pump and wraps.…

31 Days of EDS & HSD – Day 19: Reel Challenge

I'm really not a reel person. So today I am going to share 2 videos of me in different adaptive chairs. Me when I first got my Merit Lever Drive Video my mom took of me in a David's Chair This month I am participating in 31 Days of EDS and HSD social…

31 Days of EDS & HSD – Day 18: The Mental Health Side

As humans, our emotional well being and our physical symptoms can influence each other. The limitations and unpredictability of chronic conditions like EDS and it's comorbidities can be hard to deal with emotionally and that can make symptoms…

31 Days of EDS & HSD – Day 17: My Support System

A big part of my support system @laprice. I can always count on Larry in a pinch and I don't think I could manage to live independently without his help. He's a great friend and has a handsome and sweet cat. Chubbs Max Faux-Chi brightens all my…

31 Days of EDS & HSD – Day 16: Wear #REDS4VEDS Me in #Reds4vEDS This month I am participating in 31 Days of EDS and HSD social media challenge and the Walk and Roll challenge to raise money for the Ehlers-Danlos Society. You can donate on Fundraise or Facebook. You can read all my posts on this topic here. #My EDS Challenge #REDS4VEDS

31 Days of EDS & HSD – Day 16: Wear #REDS4VEDS

Me in #Reds4vEDS This month I am participating in 31 Days of EDS and HSD social media challenge and the Walk and Roll challenge to raise money for the Ehlers-Danlos Society. You can donate on Fundraise or Facebook. You can read all my posts on this…

31 Days of EDS & HSD – Day 15: What I Wish People Knew

I wish people knew how exhausting EDS and other chronic illnesses can be. I wish people knew how much I miss my career and would like to be well enough to work. I wish people knew how much I struggle to function and how much just doesn't get…