psp, to cycling
@psp@urbanists.social avatar

Happy World Bicycle Day everyone!

(yes, it's a thing! 😆)

But we're dedicated to making Phoenix a friendlier, more welcoming place to ride a bike, every day 🚲💚🌵

#BikeTooter #phoenix #AZ #advocacy

jackdougherty, to history
@jackdougherty@urbanists.social avatar

Launched today: https://myCTDeed.com to find and reject racist covenants in property deeds (with June Gold and David Ware)
Also preview of CTPublic documentary "Fighting for Home: How Housing Policy Keeps CT Segregated" (with producer Sabrina Buckwalter and team), airing June 27th

Fighting for Home CT Public video documentary, airing June 27th

chris, to fediverse
@chris@mstdn.chrisalemany.ca avatar

Last chance. If you want to have your signature on the real life letter that goes to Canada's House of Commons Speaker and others, you must tell me before 9AM PDT (about 40 minutes).

You do not have to be Canadian to sign.

Signatures received after 9AM will be on the web version.

I've made some updates to the letter including more supporting links and sources.

https://chrisalemany.ca/2024/05/31/open-letter-to-parliament-of-canada-adopt-open-services-for-social-communications/

bicmay, to random
@bicmay@med-mastodon.com avatar

"Historical photographs showcase the history of Asian American resistance movements from the 1960s to the 1980s, demonstrating the strength and resilience of the Asian American community among tenants, students, and laborers...They also remind us of the civil rights and labor rights won by Asian Americans with the sheer power of the collective."

https://www.businessinsider.com/photos-show-strength-of-asian-american-activism-throughout-us-history-2024-5

shekinahcancook, to BadInternetBills
@shekinahcancook@babka.social avatar

Join the Workers Circle and the Center for Common Ground for this month’s training on how to be an effective citizen advocate. No experience is necessary!

Led by Andrea Miller co-founder of the Center for Common Ground, and Workers Circle Director of Social Justice, Noelle Damico, this once-a-month, hour-long training is divided into two parts.

During the first 30 minutes of "How to be an Effective Citizen Advocate," we review pending legislation.

The second 30 minutes are a legislative visit training so that you can learn or brush up on how to impactfully engage your senators, representatives, and their staff.

Come for all or part of the program! All registrants will receive a video of the training, slides, an advocacy toolkit, and additional background information.

Register Here: https://www.circle.org/events/citizenadvocate-june-2024

allen, to Seattle
@allen@rail.chat avatar

The board meeting with #SoundTransit on whether to continue considering Amazon and the Mayor's alternative proposal for #Seattle 's Ballard Link is happening tomorrow, May 23 2024, 1:30-4:00PM PT.

@ducksauz 's call to action:

https://snug.town/@ducksauz/112485377016797454

To participate and submit comments in person or electronically, see the following: https://www.soundtransit.org/get-to-know-us/news-events/calendar/board-directors-meeting-2024-05-23

#Transit #Advocacy #Train #Subway

allen,
@allen@rail.chat avatar
bicmay, to random
@bicmay@med-mastodon.com avatar

"Many women are not able to travel and are forced to continue pregnancies, despite financial and health risks. We must remember them, stand up for them and continue to fight for the simple dignity of having control over our own bodies." - Dr. Cheryl Hamlin

https://msmagazine.com/2024/05/15/abortion-stories-mississippi-roe-v-wade/

cybeardjm, to books
@cybeardjm@masto.ai avatar

From the vault: 2018

Road Map for Revolutionaries: Resistance, Activism, and Advocacy for All

by Elisa Camahort Page, Carolyn Gerin, and Jamia Wilson

https://www.roadmapforrevolutionaries.com/

#Books #Revolution #Advocacy #Activism

halcionandon, to Help
@halcionandon@aus.social avatar

If people who are literally going to die if they don’t find money for their healthcare can’t raise it with the economy bring so awful (one is @Tinu who could really use the help), then what chance do I have to escape abuse and pay for all the steps to freedom?

But if ask for volunteers in to or a place to stay, it just just doesn’t work so there’s no spare money but even with this economy people struggling with a spare room would rather not help or would rather advertise for a stranger? I can pay you rent so we’re helping each other! I’m a stranger for a lot of you but not all & I have people who can vouch for me not being a psychopath! 👍

I would really appreciate people to help because I live in a safe Labor seat so accessing services is impossible in many cases because the books are closed or they don’t exist. I’ve had so many people in rich catchments tell me it isn’t so because they have the red carpet rolled out. I challenge them to call the local council and they won’t…
I’ve contacted the local and federal MPs 3 times and they don’t care. Some senators have been okay but can’t do much because they aren’t in power.

There’s no funding. I’ve been waiting for advocacy services for 2 years & no DV orgs help the disabled or chronically ill. I’ve tried them all & have emails for proof (a lot of people don’t understand that most services cease to exist as soon as you’re disabled). It got so bad I’ve even asked a priest for help (no help). He just victim blamed. Maybe I should try protestants?

Am I just not asking the right way? If you can word things better are welcome.

I’m exhausted and miss things so it’s possible!

Here’s my first Buy Me a Coffee Post that hopefully explains what I’m talking about if you’ve missed or not understood my posts.
https://buymeacoffee.com/halcionandon/if-you-can-help-please-help
There’s more info on the front page of the crowdfund too.

There’s also my article that’s finally been published: https://t.co/f1vB5pXoK6

Do realise I have rambled I’m exhausted but wanted to get this posted.

@mutualaid

bicmay, to random
@bicmay@med-mastodon.com avatar

Join Doctors for America in Silver Spring, Maryland June 6-8, 2024 for our biennial National Leadership Conference. This year's theme is “Reclaiming the Voice of Medicine.” Confirmed speakers include: Bernie Sanders, Vivek Murthy, Kavita Patel, Ellana Stinson, Cedric Dark, Alister Martin, and more!

https://doctorsforamerica.org/event/2024-national-leadership-conference/

#healthcare #doctors #physicians #HealthPolicy #advocacy #HealthEquity #FDA #PublicHealth #GunViolence #GunSafety #ReproductiveJustice #abortion

shekinahcancook, to workersrights
@shekinahcancook@babka.social avatar

From the Workers Circle
Jewish Culture for a Just World:

How to be an Effective Citizen Advocate

Thursday, June 6, 2024
7:00 PM 8:00 PM

Register Here: https://www.circle.org/events/citizenadvocate-june-2024

#WorkersRights #Union #Labor #Advocacy

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From #MEAction:

"Jaime Seltzer, #MEAction’s Scientific Director, has been selected for TIME100 Health 2024, TIME’s new annual list of 100 individuals who most influenced global health this year! This is a huge honor based on years of work fighting for equity for people with ME.

... We want to say thank you to the community that has enabled this work"

Congratulations, Jaime! 😁

https://time.com/collection/time100-health/?mc_cid=87c5bb8c63

1/n

@mecfs

#MEcfs #PwME #HealthCare #Time100 #Time100Health

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

And here's a link to the Time 100 website with her profile:

"Jaime Seltzer,
Postviral patient advocate"

https://time.com/6967257/jaime-seltzer/

3/n

#MEcfs #PwME #MEAction #MyalgicEncephalomyelitis #PatientAdvocate #Advocacy

Through #MEAction, Seltzer is helping to spearhead a major campaign to improve ME/CFS education, diagnosis, and treatment. Thanks to Seltzer’s efforts, staff at big-name institutions including Emory, Brown, and Georgetown are working with #MEAction to improve education programs and treatment plans related to ME/CFS. Those efforts build on a partnership Seltzer made last year with the Mayo Clinic, through which she helped revamp the health system’s public-facing ME/CFS fact sheet and designed an algorithm to help doctors better diagnose and treat patients.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar
ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

#MEAction email:

"Teach ME Treat ME will be here in the next few weeks! While many of you are preparing to host medical education events, we know that thousands of you will be participating from home!

We are beyond excited to share the Show Up From Home Toolkit! This toolkit lays out an array of ways you can take action from home based on your energy level."

https://mailchi.mp/meaction/millionsmissing-2024-show-up-from-home-toolkit

@mecfs

#MEcfs #PwME #LongCovid #MillionsMissing #MedEd #MedMastodon #Advocacy #TeachMeTreatME

ahimsa_pdx, (edited )
@ahimsa_pdx@disabled.social avatar

The "Show Up From Home" toolkit rates the "Teach ME Treat ME" advocacy tasks by energy required, from lowest to highest.

I want to acknowledge that folks with severe ME may be unable to do even the low energy activities since they are in survival mode 😔

@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Jaime Seltzer posted a thread about on Bluesky:

"The Teach ME Treat ME campaign is turning out to be an incredibly successful campaign for Millions Missing this year! Local and state groups are doing in-person medical education events; is also engaging in longer-term partnerships to create products to transform ME/CFS care. (1/6)"

Full thread here:

https://bsky.app/profile/exceedhergrasp1.bsky.social/post/3kpfuknclok22

@mecfs

NewsDesk, to politics
@NewsDesk@flipboard.social avatar

Only 7% of U.S. Congress members are women with minor-age children, despite composing 18% of the country’s population. A Pew Research Center poll last year showed almost half of American women say family obligations are the reason men outnumber women in office. Now, female legislators seeking to correct this imbalance are advocating for policies that accommodate mothers in politics. Read more from The Christian Science Monitor.

https://flip.it/h_8CC4

#Politics #Parenting #ChildCare #Advocacy

broadwaybabyto, to disability
@broadwaybabyto@zeroes.ca avatar

Awhile back I went to a specialist for unexplained & painful lower leg swelling. His diagnosis?

“Maybe your legs are just getting fat.”

Horrified…I asked how many people gain weight ONLY in their calves. He shrugged me off. A 🧵 on knowing your body & advocating for care

This doctor did NO tests before deciding it was weight gain. Wouldn’t discuss it with me further & wouldn’t permit me a second opinion. I went home completely dejected and also worried because I KNEW something was wrong.

For the next few days I elevated my legs as much as possible and tried to gently massage them to see if it helped. They just kept getting bigger. Eventually they started weeping (fluid was seeping out of my skin) and my ankles were dislocating from the pressure.

So I went to the ER. I was actually nervous about going because I could only imagine what that doctor had put in my chart. Thankfully I had a doctor who took the swelling very seriously and ordered a wide range of tests (and immediately put me on bed rest to protect my ankles)

Turns out it was a combination of third spacing from my MCAS (when the fluid doesn’t stay in the vascular system & leaks out into the tissues - can be a big issue if you have POTS as well) and low albumin. Dangerously low albumin.

Needless to say I was suffering from malnutrition due to my extensive GI issues and that was causing the swelling. It most definitely wasn’t weight gain. I was underweight with the exception of my legs.

I never knew that low albumin could cause painful swelling like that - nor did I even think that I was suffering from malnutrition. But with both POTS & MCAS it makes sense.

Our digestive systems are controlled by the autonomic nervous system (the system malfunctioning when you have POTS) so it’s not uncommon to experience vomiting, diarrhea & other gastric complaints.

MCAS only compounds the issue by limiting the foods you can tolerate and also causing vomiting and diarrhea. The two conditions make getting adequate nutrition a challenge - especially if you’re on the severe end of the spectrum

I’m very grateful to the doctor who figured it out and helped me get homecare so I could get proper nutrition & stay off my feet while the swelling was at its worst. But it took a LOT of courage to go to the ER after being so rudely dismissed.

This is a lesson in the importance of knowing your own body & having an advocate with you whenever possible. I KNEW something serious was wrong but I had no one with me to challenge the first dismissive doctor. And he was completely unwilling to listen to me.

Don’t ever feel like you can’t get a second opinion or go to a different hospital if you feel you aren’t being taken seriously. And don’t ever apologize for advocating for your health. If you don’t have someone who can go with you - try & phone or video a friend.

Lastly can we please start listening more to patients? We know our bodies best and when you dismiss us it causes not only physical damage - but emotional damage too. You make it harder for us to seek care in the future.

Patients shouldn’t be dismissed without any tests being run. Had I not gone to the ER I could have ended up with life threatening cardiac issues from the electrolyte & fluid imbalance. A simple lab test would have confirmed the diagnosis had the first doctor cared to do them.

This experience was also an excellent reminder of the far reaching effects of dysautonomia & MCAS. It’s important to be as educated as possible in these conditions & the strange downstream complications they can cause.

And remember dismissal & gaslighting is often far worse for marginalized individuals. There’s a LOT of bias in medicine. If you’re someone in a position of privilege please call it out when you see it - and offer to be an ally to those who need support. Allies save lives

broadwaybabyto, to disability
@broadwaybabyto@zeroes.ca avatar

Doc to me: Could you be pregnant?

Me: Nope - they removed my uterus.

Doc: Are you sure? You look young. Maybe it was your appendix?

Me: I know the difference between my appendix and my WOMB.

Doc: Orders pregnancy test anyways

We really need to discuss how AFAB patients get treated by many doctors. If you need to do a pregnancy test on everyone as a matter of course - then just do the test. But don’t waste time arguing with me about whether I know the difference between an appendix and my LITERAL womb when I’m having a life threatening cardiac emergency.

#Gaslighting #disability #ChronicIllness #Spoonie #ableism #discrimination #advocacy

broadwaybabyto, to disability
@broadwaybabyto@zeroes.ca avatar

“Have you tried just doing X? Surely if you were that sick you would have help. Maybe you just haven’t tried hard enough.”

How often have disabled & chronically ill people heard statements like that? I wrote about the gaslighting many disabled people experience - and how you can cope with it, set boundaries & find your tribe: https://open.substack.com/pub/disabledginger/p/gaslightingforthenewlydisabled?r=19dk2e&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From The Sick Times:

"Photo essay: Long Covid advocates gather in DC for demonstration"

https://thesicktimes.org/2024/03/18/photo-essay-long-covid-advocates-gather-in-dc-for-demonstration/

"On Friday, March 15, people with Long Covid and their allies gathered in front of the Lincoln Memorial in Washington D.C. for the Long Covid D.C. (LCDC) protest to commemorate Long Covid Awareness Day."

@longcovid @mecfs

cacu, to internet Spanish
@cacu@todon.nl avatar

I just finished the 2024 AA-ISA Assembly , was chido, I did it while doing my chores and meals. https://advocacyassembly.org/en

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From World M.E. Alliance:

"Be part of the World ME Day 2024 campaign film"

https://worldmealliance.org/2024/03/be-part-of-the-world-me-day-2024-campaign-film/

"As we approach World ME Day 2024, we invite you to be a part of a new short film that aims to shed light on the reality of Myalgic Encephalomyelitis (ME)"

Deadline for video submissions is April 1st.

@mecfs

#MEcfs #PwME #MyalgicEncephalomyelitis #GlobalVoiceForME #Advocacy #MEAwareness

puneetsiinghal01, to disability
@puneetsiinghal01@mastodon.social avatar
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