Personal acct. Politics, disability, chronic illness, cats. They / she. Disabled. Sick. Tired. Swears a lot and masks “aggressively”. Asks sincere questions.
Please read this 🧵. Tinu's someone who's created care networks for folks, helped so many cf. Literally kept ppl alive.
And people can't even wear a mask while she gets chemo for cancer that acute COVID sparked.
Fight for her please.
#ForTinu
I am going through a bad time mentally and physically. Both the hospital that is supposed to be making me better
And the insurance company that is supposed to cover my care is treating me like my life is worthless.
After being treated like this for two and a half years it is a
So I got Covid, from a medical appointment.
At a cancer center where patients and their companions were packed, mostly maskless, into poorly ventilated waiting areas.
How many people there with cancers or treatment that wreck immune systems got covid that day?
I currently have my 1st covid infection. I needed care. Instead, I got COVID… at a cancer hospital.
This isn’t hierarchy of illness.
This is:
WE KNOW PEOPLE GETTING CHEMO ARE HIGH RISK FOR GETTING VERY SICK OR DYING from infection & we aren’t even masking in these spaces.
Meanwhile I come home sick from chemo EVERY month.
My system has deteriorated so much I am now going to chemo on Monday
STILL SICK from the last time I had chemo.
It is literally, actively killing me that people don’t mask. No one cares. 😭😭
#WearAMask
You can literally hear people screaming at others in the audience.
This attorney tried to point it out, to say that there are people in the audience harassing masked members of the community there, and his mic was cut and he was threatened with police.
#NoNYMaskBan
US folks:
If a doctor terminates your care because you ask for an accommodation, it’s potentially patient abandonment.
Patient abandonment is reportable.
I understand if you don’t want to go through the trouble, but if you’re up for it, you can report them.
[thread CW: child & patient abuse, mention CSA]
A Boston hospital just sent out a new "code of conduct" message thru their patient portal to tell me all about the zero tolerance tone policing policy.
Because patients are "being more combative".
Let's consider that.
1/10
@SeeMiaRoll
@Marriott
Marriott, after you address with Mia the problems that your illegal policy caused for Mia, how about you let the rest of us know what you’re doing to ensure this never happens again?
I suggest starting with dropping your new policy of discriminating against
#disabled
people.
Are patients becoming more combative?
Or when patients get caught on the jagged edges of our shattered healthcare system, when patients are hurt by this violent to all system, is it now a dischargeable offense to do anything other than sit there silently while being hurt?
2/10
5/10
I realize most healthcare professionals say they practice trauma informed care but they don't actually.
It's aspirational.
So I'm not surprised many fall short of real trauma-informed care, which is why I'll sometimes actually SAY something to cue them into trauma space.
[CSA mention]
4/10
I recently, calmly told a nurse (before she took my blood pressure at an appointment where I needed a pelvic exam) that I had PTSD as a survivor of CSA. This might affect my BP.
Her response:
"If you get combative, I'll call security."
She said it twice.
6/10.
It doesn't work great, but it means if I get "weird" there's at least a chance someone won't take it as a personal offense.
Now? There is no chance.
Now, just disclosing PTSD is treated as a threat of violence. Now, you better be good. Better not tell. Better be quiet.
9/10. [medical neglect, abuse]
#Disabled
people get left without assistance to reposition, toilet, eat. Even in acute care.
What is a more offensive offense? Leaving a human without even basic care; or that human expressing anger & fear when they're left without even basic care?
@sickgirlmeg
“It’s been hard for everyone” says a presumed-healthy person who’s been working ftom home but going out to bars & restaurants, weddings, vacations, concerts, amusement parks…
7/10
In 2012, I had unexpected surgery. I woke screaming, swinging, trying to pull out lines, run away. I was terrified & delirious.
I joked sheepishly later that maybe just my amygdala woke up. Staff said: it happens, you can't control it, it's ok.
Now? Guess I'd be punished
10/10 [child & patient abuse]
I fear that to hospital admin & staff, it's the latter.
I worry this hospital admins see that their broken system is chewing us up & rather than remedying it, they're effectively saying: "Shut up or we'll give you something to cry about".
8/10.
One time I passed out hard & came around in the ambulance as someone was putting an O2 mask on my face. Semi-conscious, I didn't know where I was. I fought b/c I truly thought someone was trying to suffocate me.
My care wasn't terminated back then.
But now? It would be.
[child abuse]
3/10
As a survivor of long-term child abuse, my vigilance is hyper.
A medical analogy: I don't have super specificity, but do have high sensitivity to early & slight signs of toxic, abusive, & violent systems & people.
I want this to be a false positive, but...
@jason_tebbe
@prof_goldberg
“Please stop,” said my 1st year graduate semantics instructor as I stood in her doorway nervously kicking at a loose floor tile.
“Oh, I’m sorry. It’s crumbling,” I said.
“Yes. It is. And it’s asbestos,” she replied.
@Imani_Barbarin
Damn. Yeah. When I say people can’t afford to catch covid, this is what I’m talking about. It was already too easy to fall through the cracks, now the cracks are chasms.
“Among the 181 who were sickened at the CDC conference, the median age was 38, nearly all were younger than 65 and two-thirds were women, Nordlund said. No severe illnesses were reported.”
Yeah. Follow up in 6 months & see how many have long covid. How many lose their jobs.
Here's a link in case of paywall. Remember, this was shrugged off when first reported. Now it comes out that 181 people, 1 in 10 attendees, were infected. 70% were unmasked.
I can’t take paxlovid without stopping a medication that’s stopping me from having pulmonary emboli.
I already need help to bathe, prepare food, stay hydrated. The person who does that is also sick. Because they were with me at the medical appointment.
Three years ago,
… their father was dying of covid.
It wasn’t fast. Like people may think.
It wasn’t 1 trip to the hospital. It was days in & out, us up late at night going over meds & care plans with him.
He died of a brain bleed after weeks of acute infection.
Now we have this infection
@RachelCDailey
I *FEEL* the gut-wrenching frustration.
I left my graduate program over their refusal to consider such accommodations & I lost my last job in part b/c my supervisor had issues with me working from home (HR granted the accommodation, boss made sure it was a shitshow).
@redrum_memes
@RandiFoorDalton
Holy helling hell.
Thank you for filing that grievance, because putting her horrible behavior on record is important. I'm so sorry she happened to you.
@fearnley_k
Thank you for sharing your experiences. Since early on in the pandemic, I've worried at terms "mild", "moderate", & "severe" since how they're used medically vs. how their understood in general are different. Long Covid adds a whole other layer to my concerns.
[death, abuse by HCWs]
My friend
@kynurse4change
died this week. Emily was an advocate for patient education & empowerment. She died in a crumbling healthcare system that's little more than a trauma machine. She was killed by healthcare that ranged from careless to cruel.
1/?
#MedTwitter
please read this new study on “clinician-associated traumatization” in
#EDS
. We need you to stop giving patients PTSD just because you don’t understand their illness. Same study could be done in
#POTS
#autoimmunity
#LongCOVID
#fibro
etc. 1/2
a disability rights advocate I look up to recently said using the term "eugenics", while it may be accurate, can be unhelpful because it can come across as unhinged.
I don't think there are polite words to use for this. I can't find them & wouldn't use them if i could.
I had a friend who was born during an influenza outbreak in the 70s.
In all the baby pictures of my friend, every adult around him wore masks & gowns, careful to keep this child safe.
We used to do better. We can do better.
💗😷💗
On “choosing” to work while sick.
If you’re sick but your boss thinks working while sick is “normal”, even noble, guess what? You HAVE to work sick.
Or get fired. Or disciplined out of your job. Actually bullied. Made sicker. Hurt.
So fuck elevating this shit.
#PodSaveJon
Just to follow up: the brand of person I was referring to is someone who tells people to fuck off if they choose to work from home while sick. I don’t find that persuasive, I find it unhinged.
Long Covid is real, tragic, and deserves more attention (I had a post-Covid condition
[death, crumbling healthcare]
Last week, I was diagnosed with a condition that has a mortality rate of 14% at 1 month, 33% at 3 months.
The healthcare system my insurance requires me to use can’t get me in to see the specialist who may be able to treat it for…
5 months.
@AnaMardoll
A library near me has that.
I merrily hang my tag and park in the "attaboy" space since it's closer & more accessible than the disability parking spaces.
That's a hill I am 100% willing to die on.
@CDCDirector
How about if you’re vaccinated but immunocompromised? Or severly ill? Or can’t get vaccinated bc you’re getting chemo? How about homebound still waiting for an appointment? Do you even know we exist?
Disclaimers:
I’m white.
I only follow olympics via spill-over into social media. I look up news if I see something I want to know more about.
1/3
Seems like there’s more specific focus on & outrage at Noah Lyles (for competing while COVID+ & ill) than for not Black athletes.
@plagueprose
oh my god that doctor is being so awful. She is inappropriate, unprofessional.
Also, I feel like I want to tell you, you did NOTHING wrong. Moreover, your responses to her were amazing. You we clear, and advocated for yourself. You were appropriately upset by her threats.
@bennessb
Misattribution. Many of my illness symptoms & disabilities are perceivable in a variety of modes. But ableds & presumed healthy ppl misattribute what they witness. E.g. flat affect & low energy = angry, rude, lazy, disinterested (rather than pain, nausea, fatigue).
@theBrianaMills
I was raised in an abusive home. There are misconceptions that this means every day was violent. It wasn’t. In between, was risk. In between, you were expected to act “normal”.
I’m destroyed by the similarities, the violence of the command to “be normal while we hurt you”.
Ok, I am muting this now.
It is heartbreaking to see how much this resonates for so many. I hope we can find ways to connect & support one another, maybe fight back together against policing tone in healthcare contexts.
I will also note: be kind, content warn.
"Unless you have the luxury of staying home all year, you will have to get creative too."
I'd like to clarify, for shyte-goblins like this who apparently need clarification - staying home all year is not a luxury. Being excluded from every part of society is not a luxury.
2/3
[forced exposure]
@MassGenBrigham
says patients can’t ask staff to wear a mask.
They are a huge healthcare system in Massachusetts. They are effectively locking people out of safe healthcare.
A nurse came into my room the last day I was hospitalized. She looked around, grabbed a mask, & said as she put it on “everyone else is wearing one, so I figured it’s for a good reason.”
🙌
This.
It’s a critical mass social effect.
Many WILL wear PPE when they see others are.
For those who aren’t familiar with the bullshit of job searching while disabled, I present: the higher ed disability advisor job description which includes the following (incomplete) information that’s there simply to justify hurting disabled employees.
@kendallybrown
I just watched a video of someone who was identified as her during the lockdown, smirking as she refused to put on a paper mask. If I live long enough, I’m going to do what I can to support the dem who runs against and defeats her.
@Olas_Truth
Urology nurse stood behind me & tried to pull my shirt off (without asking if I needed her “help” with it) so she could get my arm bare to check my blood pressure.
I gently & slightly move away, saying “I have PTSD…”
Nurse: “If you get combative, I’ll have to call security.”
wow. just... wow.
so if you're an immunocompromised person with a job or who goes to school, what the fuck are you supposed to do now that there are little to no more supports for time off / remote access? The CDC did a great job erasing us & obscuring the realities of COVID.
[CW: antisemitism, pretty bad]
BUT
@Imani_Barbarin
's analysis - as always - is amazing. These are lessons we need to know, practice, and pass along, iteratively.
@JoannaNoBanana
That disability is not a binary, static category.
That self-compassion isn’t selfishness, laziness, or giving up.
That tick checks are very important.
That mobility aids preserve /restore independence.
That it wasn’t “just growing pains”.
CW: police violence, eugenics.
Please, please… call out police removing people’s PPE.
But please recognize & speak about this with the awareness that it isn’t new. Police doing this is another form of violence from a set of people well known for being violent.
Yes. Hire
#disabled
commentators, advocates, & journalists. And campaigns & party committees, hire & elevate disabled staff who work within the disability community.
#CripTheVote
@KTLA
"Health officials still recommend that people who test positive for COVID-19 wear a mask, avoid contact with those who have a higher risk of catching severe COVID-19..."
How do health officials suggest people know who around them is higher risk of catching severe COVID-19?
I’m old enough to remember when clinical staff smoked in U.S. hospitals. Ashtrays on tables in hospital cafeterias. Nicotine is addictive. It was hard to change their behavior but they did.
For the HCWs whining about wearing masks now, grow the fuck up & put on a mask.
Is there some kind of rule that says doctors’ offices must have the heaviest, hardest to open doors on patient bathrooms? Because every pulled muscle in my neck would like to know.
@SeeMiaRoll
It doesn’t. It makes no sense. There is no explanation for why, if they’re requiring a new mask they are sure of, that they can’t offer a GOOD, effective mask. Forcing a swap to a gappy surgical mask is a sign of not actually caring to prioritize our health & safety.
@JulianCastro
@ewarren
@TheDemocrats
(I'm nearly done.)
@ewarren
engaged directly & widely with the disability community, earlier than other candidates (of those who have bothered). She's got plans, & those plans have plans. I read them & I feel like there's a way forward. She's who I'm supporting.
8/8
#CripTheVote
Texas gave
@Tinu
COVID & Long COVID. COVID activated her cancer (CLL).
She's been fighting 1.5 years for care, but at $13K a month in TX (a state that never enacted the Affordable Care Act), this life-saving care is out of reach.
Help save her life.
#CrisisCrowdfund
#ForTinu
@bennessb
“So what makes you think you have a radial artery occlusion?” the smarmy fellow asked smarmily as I sat in my hospital bed after I had been admitted the night before thru the ER, where they did a vascular ultrasound & found evidence of a significant radial artery occlusion.
I am begging recently disabled folks to learn about disability / disabled history.
Follow disabled elders (who may not be what you consider old).
Uplift community.
& if you’re white (I am) understand that even in disablement, we still have a lot of (relative) privilege.
If Jon were up on crip / disability culture, he’d know we’ve been talking about the problem of prominent people publicly promoting the “push through it” paradigm.
(I’m gonna let that alliteration stay as a loving tribute to my total damn hingelessness).
#PodSaveJon
Just to follow up: the brand of person I was referring to is someone who tells people to fuck off if they choose to work from home while sick. I don’t find that persuasive, I find it unhinged.
Long Covid is real, tragic, and deserves more attention (I had a post-Covid condition
wearing a mask is not an accommodation.
wearing a mask is access,
for you, for me, for others we don't know, for others we know but don't know their health status, their financial status, what they are willing to take on or what they can afford.
wearing a mask is access.
Trading risk for risk, experiencing coerced exposure, knowing you cannot afford to catch COVID or can't afford to catch it again.... that's not a fuhking luxury.
Framing it as such is a shyte-take. It's left-appealing doublespeak in service of capitalist eugenics.
3/3
@JolentaG
I’m imagining describing everything at this level of drama.
“It’s going to rain so I guess I’ll have to COMPLETELY CHANGE MY LIFE and bring an umbrella.”
I had favored
@JulianCastro
as a candidate.
I was hoping that I wouldn't have to choose between Warren and Sanders this early on, but a few things happened.
A thread. I'll add
#CripTheVote
here too, but it's not implying any endorsement from the larger community.
1/
3/? When she was alive, fighting for hospital & home care, when she was fighting for her life, she told me to TELL HER STORY if they killed her.
So I'm telling you what I know.
I know that Emily was traumatized & killed by a healthcare system that's collapsing into eugenics.
Hi yt comrades.
Read. Learn. Share.
And then go compensate
@FaatiTheStreet
for them having to take time & energy to bring this history lesson to you.
You will find their 💵🔗 here, copied & pasted from their 🧵:
The Black Panther Party Famously was known for working in solidarity with disabled activists by helping to feed the disabled activists while they protested in the 504 Sit-In.
Let’s be really real right now, nobody was calling them ableist. They were calling them ‘Ally.’
The care that
@Tinu
needs is expensive. Yes with insurance, yes with every option looked into & used. This is healthcare in the US.
We need to support Tinu while she works to get life-saving care here. Now. Please.
#ForTinu
Venmo: TinuWrites
Another doctors visit.
Scans tomorrow, insurance should ? Cover it?
Due to the status of my health which the ultrasound & ekg I had to find money for told them.
So I’ll be doing some automated posts today & possibly tomorrow.
Thank you for your help.
[death, grief, healthcare provider induced trauma]
4/4
I'm gutted. I miss my friend.
I know what Emily experienced is not unique. Trauma, abuse, neglect, gaslighting, actual assault, criminalization. I know has happened, is happening to many.
What are we going to do about it?
2/?
She was abused, both physically and emotionally, by healthcare workers. Were there still some good ones in there? Yes. They are getting scarcer. And the overall approach to complex chronically ill patients has accelerated into one informed by eugenics. My friend was killed.
centrist Dems & others who accept a infantilizing perspective of disabled people will clutch their pearls at the call out, so let me add: Biden is by no means the only politician who pats us like we're someone's pet bunny.
@maskbloc614
@RiversideHosp
This must have been terrifying for the patient and their advocate.
I will call, but want to confirm the person who was denied care (& the person assaulted by hospital staff) consent to this action first.
If there’s anything else they need for support, please let us know.
@KatAMacfarlane
Tou probably lnow this but I’m saying it for others seeing this thread. The school could have granted a temporary accommodation while you got documentation. They also don’t need to force u to get new documentation every year for chronic conditions. They CHOSE to make this hard.
@cyreejarelle
Claim your disabled / disability identity before others (non-disabled) do it for you. Their version will not respect or possibly even acknowledge your autonomy.
Not legal advice. I’m not a lawyer.
But as a peer patient, I will try to find some resources to add tomorrow when I can see well enough to dig through all the info that’s geared towards doctors rather than patients.
@DisabledDoctor
Thank you to your spouse for fighting for this, for at least trying.
It's stunning how committed so many people are to this "casual" eugenics of in-person only for events like this.
[CW: domestic violence, child abuse]
Help 4
@WokeLiving
This mom had to travel out of state to save her children from their abusive father. Temp housing + food, legal, med, on razor's edge budget is HARD as hell.
P: paypalme/FightingForThem
V: FightingForThem
C: $FightingForThem
I've never had viral tweets before.
Systems to help ppl aren't there, are inaccessible, or are violent.
Community care is needed until we can change it. Here's a good
#MutualAid
thread.
Click thru.
Scroll.
Make doe-nations or share.
Thank u.
❤️
Time for our
#MutualAidThread
.
If you can see this? RT/QT!
If you can afford it? Donate!
If you're in need? Tell us how to help in 2 tweets or less!
For an extra boost, come to our meeting at 7:30 pm CT about the future of
#MutualAid
.
Link and rules follow.
@ashishkjha
hey how's your friend who had a transplant doing? the one you used as a rhetorical device in the opinion piece the Boston Globe to published for you. Since you used him, let's hear about how many infections he's had and how he's doing.
Other high risk people want to know.
Back in early '22,
@Tinu
caught COVID.
She nearly died from the resulting pneumonia.
While recovering:
her
#cancer
came out of remission
+
she developed
#LongCovid
.
She needs support for care.
Help out.
I’m too sick to do any of this right now.
@BeingCharisBlog
called me in about it today.
@Mae_DayJ
did too recently.
I’m just dying faster trying to save myself & the world as I decline.
I have to go on rest NOW. So I am.
#MutualAidRequest
1/3
I saw an ay-whole art prof talking about how now that his school dropped mask requirements on campus, they can have "real" classes. When someone pointed out his comments were shitty (my words) to people who can't afford the risk of (repeated) infection, the ay-whole said:
Someday, I'll write about how a non-negligible part of "healthcare privilege" is the BELIEF you'll get the care you need when you need it.
Sometimes the belief is true. Sometimes it isn't.
I hypothesize it's a strong independent predictor of COVID risk behavior & attitudes.
@Walling_B
Happy to call and yell at them for / in addition to you.
I am truly sorry your grandpa is sick, and that your family tried to hide their terrible behavior.
Pain is not “discomfort”.
Your civil or human rights being violated is not an “inconvenience” .
Advocating for safe, appropriate care is not “abusive” or “combative”.
I believe there were some people talking about disabled gig workers. It’d be great if folks support disabled gig workers, instead of using them as hypotheticals in arguments.
My friend
@Faux_Fox_
is an actual disabled gig worker who could use some actual support.
I am on my last pair of contacts, & have not had an eye exam in 2 years. I desperately need to have one so I can get more contacts. W/o them, I can't drive or work (or do anything else tbh). It's $160 (exam) & $300 for contacts.
C*shapp & V*nmo: foxrook
@JortsTheCat
@westeawest
you're separating them.
read some of the QTs, the ones that are siding with you.
read their hostility towards the entire notion of grocery delivery.
follow disabled people & see how we get piled on by "allies" when we talk about a food or grocery delivery gone bad.
What I’m saying, especially to other yt people, check the specific & focused outrage u have for Lyles, especially if you’ve been following the olympics.
Consider the difference in media narrative for Lyles vs the narrative for other (white) olympic athletes with covid.
3/3.
@PanickedFoodie
Good reminder.
What grates about their current bullying over oral thermometers / temps is that I swear pre-pandemic, it was ear thermometer nearly every time. But now they suddenly give a damn about accurate temp checking. It feels like it’s not so much about quality care.
@StinkRatsCharms
I'm going to retitle this: "I'm ok with the idea of my husband dying because I guilt tripped him into eating indoors at a restaurant for the good of our marriage because being seen eating is more important to me than MY HUSBAND'S LIFE"
I honestly think I'm going to be sick.
1/3 [death]
I don't know how to tell some of you new-to-disability-spaces folks this but there is a FUCKTON of bullshit in and around establishment disability rights culture.
Preserving personal power and proximity to power are as high a priority as getting shit done.
AND...
I can't with the leftists who think that anyone still giving any shits about COVID mitigation is a.. .what was the term? Nepo-kid? Nepo baby? Right. The latter, because some set of these socialists-for-now folks embrace authoritarian patriarchy tools like using age as an insult.
@KTLA
Unnamed representative with the California Department of Public Health: “Most of our policies and priorities for intervention are now focused on protecting those most at risk for serious illness."
Where? How? What are they actually doing for this? Not a damn thing.