#advocacy in healthcare

[mxmorbidmidnight]

Its honestly terrifying that I'm the one educating healthcare professionals on my medical condition. When I was hospitalised for my tics I was attended to by psychiatrists and asked questions about whether I was hearing voices and similar such things. To those who don't know Tourettes is a neurological condition, I should have seen neurologist rather than psychologists and psyciatrists. I was put on anti psychotics for months that ruined my mental health and did nothing to improve my tics. The wariness from this situation led to me refusing and hating medications for period of time, making situations far worse.

A psychiatrist diagnosed me with Tourettes. He was not qualified to do that, only a neurologist can diagnose Tourettes. When I went to see a neurologist who we were told specialised in tics Upon arrival, after months and months of waiting we were told:

oh yeah sorry this is too complex for me. I don't really know anything about tourettes.

I've been forced to educate myself because I just cannot trust doctors.

I've been told things from "oh everyone gets that" too you just need to sleep more, eat spinach, you're too stressed about school.

It's scary when the people who hold your life in their hands don't understand the basics of your medical condition.

My situation is better than most. I have been extremely privileged where my family could afford private health and the many treatments, specialists and medication I need to not suffer and be able to live my life. This is how bad it is for me, you can imagine how much worse it is for people who cannot access this healthcare. People who don't have the option to go to the hospital in case of emergency, people who can't afford to switch doctors until they find one that takes them seriously, people who can't afford medications.

[ontheoutside-lookingin]

Clinical misdiagnosis is more common than self misdiagnosis. Just for the record, in case anyone is still skeptical of self diagnosis :) it’s not up for debate btw

[chronicsymptomsyndrome]

Can we go ahead and normalize medicine? Taking pills in front of people? Taking pills in public and not getting weird looks? Using alternative medicines or anything other than pills and not being treated like a novelty? Fucking please because first of all literally everyone takes medicine of some kind at some point in life okay and second of all people need medicine to live it’s a thing it’s pretty common and people need to be in public for a lot of reasons actually so can we please

[librarycards]

The term “social transition” has a non-trans history in the psychology of adolescence. In the 1980s, it was an operative metaphor for describing adolescence through the American trope of a rocky period of self-making, what one psychologist in 1978 termed “the difficulty of adolescence as a transitional period.” The primary “transition” that concerned psychologists at the time was school, where social shifts in friend groups and hierarchies from middle school to high school affected a young person’s self-esteem and mental integrity, resulting either in positive self-actualization or, if the social transition went poorly, “problem behavior.”³

The term “social transition” was only later adopted by psychologists and psychiatrists looking to powerfully expand their jurisdiction over trans youth to include entirely non-medical practices that often spur parents to reject or harm their kids: wearing a dress, cutting or growing out hair, wearing a binder or a bra, wearing makeup, or adopting a new name and pronouns. Making those banal but concrete practices of changing gender into psychiatric events was intended to convince anxious and angry parents that they shouldn’t put down their children. By the same token, tying practices of clothing and self-description to healthy development overinflated them with a pathological degree of significance, upping the ante and creating a lucrative target, both for parents of trans youth who wanted to stop their children from transitioning and, now, politicians.

I don’t mean to imply that psychiatry directly caused HB 2885, just that it clearly holds one part of the blame for inventing the root vulnerability that Gragg has taken advantage of in Missouri. If anything, the attachment of sex offender felonies to a teacher complimenting a teenager’s haircut exposes, once and for all, how fraudulent the medicalization of transition has been all along. Gragg can claim the right of the state to control children’s dress and speech (masquerading as the rights of parents) through teachers and counselors, in part, because psychiatry and medicine first claimed the right to regulate trans youth’s practices of transition.

Still, the causal events that led to HB 2885 run far deeper than the shallow history of “social transition” as an especially foolish psychiatric fiction. Here lies the far bigger problem raised by this bill. Not only will psychiatrists prove to be the least effective political allies of trans youth in Missouri, but contemporary queer and transgender culture’s elevation of the private right to dress as the sine qua non of politics is also quite useless as a political strategy.

Part of what I gather stuns in bills like HB 2885 is their audacity. The law would target the most conservative, least politically subversive of all transgender practices: individual style, identification, and language-use. In the case of minors, “social transition” is also a cheap compromise offered to young people who are refused blockers and hormones by disapproving parents and doctors, but that compromise is offered in a broader queer and transgender culture that has elevated self-identification through style as the ultimate arbiter of being transgender, making it much harder to advocate for a genuine right to transition for anyone, teenager or adult.

[...]

Students have very limited First Amendment rights on school campuses, meaning that they cannot present themselves as private individuals enjoying the right to dress as they please.⁷Their self-expression is governed from the outset by a competing set of custodians, from parents to schoolteachers, to psychiatrists and doctors, to the Missouri House of Representatives. Trans youth’s interests are therefore materially extraneous to the mainline of contemporary queer and transgender culture, whose architects were wealthy, college-educated adults whose prior enjoyment of full-citizenship was the very reason they demanded only the affirmation of a right to dress.

I suspect that part of the genuine shock of bills like HB 2885 is that most people reasoned that LGBT liberalism’s elevation of the private individual over all other political concerns would inoculate dress and language from state interference. It evidently has not. What perhaps has been misunderstood, then, is how the state exercises power. The law cannot prohibit being transgender, for there is no such state of being. The state has no need to target people’s interior selves, either, for the law can seize people where it always has, in concrete social practices that it simply declares are the undesirable traits of transgender people—namely, practices of transition.

Jules Gill-Peterson, The Unimportance of Wearing Clothes. [emphasis added]

[alwaysinbetweeninsaneandinsecure]

This queer family has had a harrowing journey with becoming political refugees of an anti-trans state and then becoming unhoused. They managed to get housed BUT their new home is majorly inaccessible. They need help to add a stairlift so that members of the family can safely and easily access their basic needs. Please give what you can and please reblog! Alternative ways to contribute to this family's well-being (and avoid GFM's fees):

V*nmo & C*sh*app: SoundsFromGinen (organizer of this fundraiser on behalf of the family)

V*nmo & C*sh*app: BlackTransParent (the parent of this family, Tae)

[us-the-voices-and-more-voices-2]

well, shit is getting straight up untenable in Australia!

that's why we got a new bio, also because we are sick of the anon's just block us damn.

but no legit, they are fucking up the NDIS and THAT IS BAD, it's literally the only governmental support for all disabled people in Australia by the way it's the "national disability insurance scheme" aka NDIS.

so uh BAD, real bad, extremely bad, uber bad.

there's more, uh so yeah!!!! FUCK MAN.

I do hope people don't die, because this is just going to lead to people seeking help from the gov't dying in the meantime.

or if the gov't says "yeah your not disabled (is disabled) get zero accommodations loser" then well that's BAD.

I already know like tons of people who couldn't get NDIS money and they were straight up disabled, and people who desperately needed those accommodations and couldn't because the government just straight up would not listen and help them.

it's pretty fucking telling that more than half the disabled people I know in Australia literally could not get on the NDIS.

this is just making a already shit situation worse, I haven't been able to go to the dentist, GP, or the eye doctor people in more than 5 Years!!!!

FIVE FUCKING YEARS, I know people who are straight up 2 seconds away from being homeless due to not being able to work and not being able to apply to the NDIS.

like it's fucking bad, if your parents won't boot you off your centrelink you can't get your own centrelink and can't access any accomodations or disability money, if your blak (aka aboriginal) your just extremely fucked already now times that by 4.

like dude, THIS IS SHIT.

and I know disability ally's are mostly American based, but by fuck WHAT THE FUCK, THE ACTUAL FUCK MAN.

the NDIS is not perfect there's shit ton of corruption and scammers-

(I actually know a family who's like legit scamming the NDIS lol no I don't mean like "oh those physically disabled's" I mean like they are using the money on like 3d printers and shit lol they are assholes and racists)

but like, it was barely working for people before. this is going to take the people it was barely working before and fuck them over too.

it's gonna fucking suck man, I am fucking scared for everyone.

[thedisablednaturalist]

I found a great provider that does a ton of integrative care and even does aquatic therapy (its the ONLY place in the area that has an aquatic treadmill) and its all in one building right near my apartment. The only issue is it costs $300-500 per appointment as they are out of network with all insurance companies and I have an HMO plan. I was hoping I could just go there for physical therapy but that's still like $300 per appointment.

Apparently I can petition for a gap exemption since literally no other place has aquatic therapy in my area? but it can be a bitch to get your insurance to approve it

I'm now looking into patient advocacy groups to help with getting me the care I need because at this point I'm fed up with the search. I'm tired of being constantly referred to scam holistic centers and told theres nothing they can do for my pain now pay us $50 dollars. Apparently Myofascial Release Therapy and aquatic therapy would do great for my pain but there's no place that takes insurance that does that.

I found a patient advocacy center but it costs $150 an hour so what's even the point. There is one that is free but its for people with "serious chronic conditions" and idk if they'd consider my chronic pain and spine stuff serious enough.

Im just so tired and i dont have the spoons to do this on my own anymore. I'm paying hundreds a month on insurance but can't get the care I need since its too specialized/out there or theres no specialists near me in network. I thought I picked a PPO plan but apparently not. All this stuff is so confusing and complex and I don't have the mental energy to deal with it all. And you can't ask insurance for advice because they will give you bad advice! bc they dont want to pay for shit!!

I just want to live and stop getting fucked over. I'm tired of the 15 minute appointments that don't do anything for me. That are just so I can get refills of medication. That dont explain everything or look at all my records or listen to me.

Has anyone used a patient advocate outside of a hospital before?

[thepeopleinpower]

Capitalism and colonialism took community away from us and I want it back. I’ve heard about it from my grandparents and in books and articles online. All throughout history and still today in some parts of the world. People looking out for each other. Regularly. Relentlessly. Neighbors watching each others children, having enough food to share and actually sharing it, being invested in each others lives because everyone has different strengths.

Today community has been strategically painted as a weakness and something to be skeptical of because it is a threat to the very foundations of capitalism. And that’s a real fucking shame because in reality, growing up with community and still having that through adulthood would probably make most people generally happier and less perpetually tired and stressed. It is renewable resilient versatile adaptable self-sustaining and kind of the Ultimate Resource.

[gumjrop]

The CDC’s Healthcare Infection Control Practices Advisory Committee (HICPAC) will meet virtually August 22, and infection control guidelines for healthcare settings will be reviewed. Our community and advocacy groups have pressured HICPAC to strengthen infection control recommendations and include broader expertise on the committee. As a direct result of this advocacy, CDC sent HICPAC’s proposed infection control guidelines back for more review and expanded representation on the committee, including a member of National Nurses United on the Isolation Workgroup. We must keep pressure up to ensure infection control for aerosol-transmitted infectious diseases is strengthened, not weakened. 

Despite a legal obligation to request public comments on the draft and despite ongoing calls for more transparency, HICPAC has not opened a public comment period in the Federal Register. HICPAC has limited oral comments from the public to 45 minutes, so many registrants will be excluded.

Since many politicians are campaigning for our votes this year, it’s prime time to write to your elected officials to insist HICPAC be made accountable to the public. You can use our Action Network campaign to simultaneously 1) write a public comment to CDC/HICPAC and 2) alert your elected officials that healthcare needs much stronger isolation and infection control precautions, including universal masking.

Amid this summer’s nationwide COVID surge, the CDC has acknowledged that COVID spreads year round, including in summer, and that emergence of new variants leads to unpredictable patterns of spread. However, the draft infection control guidance continues to threaten rollbacks in the use of N95 respirators for aerosol-transmitted pathogens and further weaken isolation protocols and related guidance. Despite the demonstrated benefits of universal masking in healthcare settings in the ongoing COVID pandemic, HICPAC’s draft guidance fails to integrate this lesson to prevent avoidable healthcare-acquired infections.

Use our Action Network campaign below by clicking on the blue button to write to your elected officials and CDC’s HICPAC asking them to make HICPAC accountable to the public and share your concerns about the need for universal masking and clear isolation protocols by August 22, 2024.

Send Letter to Govt Officials/HICPAC

How to use the universal masking infection control letter template

Click through to Action Network and edit the letter as you wish (or write your own using the letter for inspiration or talking points). Note: The White House and many elected officials set a 2000 character limit.

Personalize your comment with a brief statement on how the lack of universal masking in healthcare has impacted your life or your community. For example:

Delayed or missed medical appointments

Unsafe experiences, such as with workers or other patients who showed symptoms of COVID or other aerosol-transmitted infectious diseases

Infections or potential exposures that occurred in healthcare settings

Challenges faced in asking healthcare workers to mask

Disproportionate impacts of the lack of masking in healthcare on high-risk patients and marginalized communities

Letter template:

Dear Elected Official and Members of HICPAC:

CDC’s Healthcare Infection Control Practices Advisory Committee (HICPAC) is meeting August 22 about major revisions to infection control guidance. Though legally obliged to accept public comment, it has not made draft guidelines public or posted them to the Federal Register. I urge you to act to require HICPAC to open public comment for its August meeting and going forward.

Most importantly, HICPAC’s most recent draft guidelines would seriously weaken infection control, and prioritize healthcare profits over patient and healthcare worker health. Healthcare should not make us sick. 

I urge you to press HICPAC to strengthen CDC infection control guidance in line with scientific data. HICPAC must establish universal masking in healthcare as a new standard of infection control across all settings for the following reasons:

Many healthcare exposures to aerosol-transmitted infectious diseases (including COVID, measles, influenza and TB) are preventable through multiple mitigation measures including isolation procedures, universal masking, ventilation, and air purification.

Many aerosol-transmitted pathogens are transmissible without symptoms and without predictable seasonality. Diagnosis and isolation may be delayed, leading to exposures that could have been prevented by universal masking.

Well-fitting N95 respirators or better masks provide both protection for the wearer and source control. One-way masking has limited protection; masks should ideally be worn by all to reduce transmission. Hospitals should distribute N95 grade masks to visitors and staff.

Universal masking protects patients when they cannot mask (such as infants, people with specific medical conditions and procedures involving the nose or mouth).

When masking is only on request, people are unprotected in many shared spaces such as lobbies and waiting rooms.

In addition to universal masking, HICPAC must recommend layered mitigations in all types of healthcare facilities: higher HVAC standards, clear robust isolation protocols to separate infectious people from others – including by routinely testing staff and patients for COVID and other infectious diseases, isolating and cohorting infectious patients, and keeping staff with an active infection away from healthcare facilities and in-person patient contact.

Thank you for your time and attention to this important matter.

[mxmorbidmidnight]

FNDs a real motherfucker. My body went paralysed today so I had to drag myself across the dirty floor to get to my bed. Sometimes my parents will have to lift me into one of those office chairs with wheels so I can be moved. All because my fucking neurologist keeps refusing to treat me and instead sharing my medical records with her colleagues without my permission. Even though she’s never talked to me about my mental health she also wants to undiagnosed me with adhd and ocd. She also (double also) diagnosed me with functional tics however when asked she didn’t know what a functional tic is. Apparently you can diagnose people with things even if you don’t know what they are as long as you make as much money as she does

She has “forbidden” me from getting any other mobility aids and said it’s good for me to struggle a bit. So guess I’ll just keep dragging Myself across the dirty floor so I can get food and water. Thanks Doctor!

[chronicsymptomsyndrome]

fuck ABA

that’s all thank you for listening

[dykeogenes]

“what to tell a doctor to get an autism diagnosis” “here’s what i learned from realizing i was autistic at 40″ “i would never want a professional diagnosis” “person first language is so regressive” “autism symptoms are only a problem because of ableism” “we dont need treatment” “no autistic person wants a cure” “four doctors told me i couldn’t be autistic so i found a fifth” “autism is an invisible disability” “dont disclose your neurodivergency to employers” “i/dd and autism have nothing to do with each other” “nt parents/advocates have no place in autism communities” “of course im autistic have you heard me talk about horror movies” babe i have nothing in common with any of you

[recreationaldivorce]

man it is seriously depressing remembering how excited i was when i first got my bottom surgery referral multiple years ago now like things were finally looking up i was so excited to finally get surgery after waiting my entire life i was constantly browsing bottom surgery forums to read other ppls account of their recovery etc. i really couldnt wait to feel comfortable in my own skin and be able to have sex the way i wanted and be able to shower with the lights on and all that. and then that was all taken away from me. and all that imagining post-op life that made me so excited is so painful now bc i know it is so far off and possibly i'll never be able to have it bc the nhs can just arbitrarily take it away from me again on the whim of one doctor.

cant stop thinking about emigrating cause i know i would literally get bottom surgery faster if i moved to another country and went through their processes despite the fact that my initial gic referral was in 2017 lol. even if i got my bottom surgery referral today (realistically i won't be re-referred for like another decade p much, and no they won't let me keep my old place in the bottom surgery waiting list, i checked many times with gdnrss lol) it still might be faster to emigrate. i know that a friend of mine who was recommended for bottom surgery in 2019 recently had surgery (she's a trans woman, im aware the waiting times are an order of magnitude longer for masculinising bottom surgery bc of the nhs fucking up the st peters contract too) and like i definitely know foreign surgeons with wayy faster turnaround than that, although im not sure how quickly i could become a citizen to become eligible for those countries' healthcare systems. maybe i could take advantage of my british passport privileges idk how much easier that would make it. but anyway i've been on and off thinking about moving to cuba since i was 16 anyway for anti-imperialist reasons, and ofc they have free bottom surgery there. ive have stayed put bc i think there needs to be communists in the imperial core too to sabotage imperialist efforts to crush revolutions abroad if nothing else bc the british people are so impotent lol, but like damn if britain doesnt keep giving me reason after reason to leave this shitty place

[spookietrex]

Yeah, I'm not autistic. I just got 100% probablity (167/200 items) on the Aspie Quiz, a 190 on the RAADS-R, and camouflage my symptoms (got over 100 on the CAT-Q). You're right, doctor that believes autism is only for white male boys and can only present in one certain way.

[vizthedatum]

Every single person who receives a disability check represents a failure of the system to provide and integrate everyone equally.

Under the ideal capitalist free market, everyone should be given the equal opportunity to be miserable for 40 hours a week as a wage slave, no exceptions. Only by proving yourself capable of extracting wealth and value from the work of others should someone be able to escape the drudgery.

Disabled people don't get a free pass to being miserable wage slaves in this economy, it's just not fair.

Being disabled in environments and economies that don't enable or accommodate us isn't fair either.

[camerons-t-diary]

Go check out, follow, comment, share, whatever you wanna do to my TikTok. Explaining the reason for my first Phalloplasty repair surgery.

Appreciate it!!