💖💄 Aoife ♿💜
@Aoiferocksitout
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Woman about town #NYC Advocacy, Activism, Pop Culture Maven, Reader, Writer Nihongo Ivrit 🌈 She/her #Chronicillness #gastroparesis #DisabilitySolidarity
Babylon-on-the-Hudson
Joined September 2013
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About me: I'm
#NYC
strong. I am interested in
#Disability
advocacy & activism.
I want NYC to be an
#accessible
city, from public transit, to accessible buildings.
I want all patients to have better access to care, treatment options and access to resources.
#Disabled
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U.S. is suing Uber for discrimination against disabled people.
If you, or someone they were traveling with, were charged wait time fees should contact the Justice Department at 833-591-0425 (toll-free), 202-305-6786, or send an email to Uber.Fee
@usdoj
.gov.
#DisabilityRights
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What people in the disability communities are saying about people in Gaza is absolutely true.
As a non-disabled person, it's hard enough to evacuate.
Most of the time there is no plan to evacuate disabled people and we get left behind.
Right now there isn't even water in Gaza...
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Have you tried rubbing castor oil clockwise on your stomach,during the waxing quarter moon? It helped my brother's husband's brother's hamster's mother who has a condition completely unrelated to yours.
#HowToPissOffDisabledPeople
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PSA of the Day, II:
Non-disabled "leftists", when a group of you start making fun of a list of someone's medical conditions, that is not solidarity.
No one should have to tell you this.
Yes, people can have more than one illness, that's often how chronic illnesses work.
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Hey
@nyphospital
why do I have harmful notes in my medical records saying I have "victimization mentality, splitting & possible dependent personality disorder? None of these items were written by a mental health professional. Please have someone contact me to remove the items
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Virtual birthday party time 🎉🎈💖!!
This is almost 45!
I'll take it.
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Please keep talking about Erin Gilmer and let her name continue to trend.
Please keep talking about her life and her work.
Please keep talking about the doctors, hospital and system that failed her in every way.
Please keep telling the world about Erin.
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@justinmaykel
A problem for who?
Not for patients. Too many of us are constantly dealing with ableism, racism and other types of bigotry from medical staff when we are just trying to get medical care.
Learning our results means we can start thinking about our care.
Doctors don't comfort us.
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I'm getting tired of non-
#disabled
people writing about living through stay at home orders, when disabled people who live in their homes have been dismissed, insulted and ignored.
A Thread.
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Evergreen PSA of the Day:
Apparently it needs to be said yet again:
Non-disabled people, disabled and disability are not bad words.
It's what most of us prefer to be called.
Stop making up all manner of ridiculous euphemisms for these words.
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#TheCostOfBeingDisabled
for me goes far beyond the financial issues.
What did my
#Disability
cost me?
My body and mind
My degree
Parenthood
My autonomy
My ability to make sure I won't be homeless when I am elderly,& will have proper care.
What should be my right to marry
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1) I need you to know about
@GilmerHealthLaw
and her important work in healthcare.
Please read everything she ever wrote, especially her handbook on Trauma Informed Care.
Please know how incredible, loving, tenacious, and brilliant. She used her skills & talents to help everyone.
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Think back to when you were in school.
How many times were you denied permission to go to the bathroom?
How many times were you denied permission to go to the nurse's office, if your school even had a school nurse?
Why do we do let this happen to children at school??
There was a viral tweet years ago where teachers were defending not letting children go to the bathroom bc “they’re lying.” This cop ass overseer shit needs to die. Adults criminalize children + decide they’re lying about their needs + the consequences are dehumanizing to lethal.
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#TheresePatriciaOkoumou
used her 4th of July to engage in actual
#Patriotism
. Can you imagine if the 4th became known as a day of patriotic protest, instead of celebrating revisionist nationalism? I would celebrate that holiday!
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Again I ask why don't we have detachable body parts?
My abdomen and digestive system organs need to be put to the side right now until it all stops hurting this much.
Bodies...
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I have several chronic illnesses and health conditions which make my immune system a mess.
My life matters, all
#disabled
people and chronically ill people matter, even if we are under 50.
Do not forget about us, please do whatever you are able to keep us safe.
#HighRiskCovid19
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I am disabled,have chronic illnesses, chronic pain,and have no other way to pay for my medical care but Medicaid
#iamapreexistingcondition
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@DSA_LosAngeles
How long will it be before all chapters of
#DSA
take the time to learn about disabled people, be able to say the word disabled and recognize our contributions to a society with justice?
Until then, I will not join.
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@amylopan
Gallbladder pain, while a team of incompetent doctors ignored and gaslit me, resulting in three years of this thing being inside me, before one of them checked it out and said I needed surgery.
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"What happened", is not how one starts a conversation with a stranger.
#ThingsDisabledPeopleKnow
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Dad passed away a little before midnight.
He was given something so he did not suffer for the last few hours.
Please say a prayer or send a good thought for my father, my stepmom and me.
It seems wrong, weird, not right, nothing about this is alright except he's not suffering.
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Get Erin's name out of your mouth if you didn't know her and think she just needed MH care.
Don't write about her passing if you can't get basic information correct like who she addressed in her goodbye.
Don't be a ghoul now or ever.
Erin Gilmer will not be disrespected.
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Remember,as the
#IowaCaucuses
are today, that hundreds of thousands of
#disabled
Iowans, elderly Iowans, Working Iowans, Iowans with families are unable to
#Caucus
and are left out of the process.
#Iowans
please demand a change so more people can have a say in national elections
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This is what the
@HouseGOP
did today instead of discussing the human rights crisis going on rn. Get ready to call your elected officials about even more things now.
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Hooray 🎉 I am more more middle-aged today!! I'm glad to see another year and hope it's better than last year!!
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People can become
#disabled
at any age. It's not something that only happens after you turn 65. Please learn this.
#AbledsAreWeird
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2) I need you to know what
@GilmerHealthLaw
did for the Disability community.
I also need you to know how badly she was failed by US healthcare, her doctors.
She suffered for years because of the very things she fought to change.
I need you to know she fought for you and me.
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I cannot deal with this extreme
#ChronicPain
and other symptoms, and there is nothing to be done about it.
I cannot take this anymore. I feel robbed of my words, my autonomy.
Trying to remain positive is a 24/7 job.
If you feel like this too, my DMS are Open to you. ❤️❤️
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3) I need you to know that
@GilmerHealthLaw
was a real human being.
She was fun, loved her kitties, was salty when necessary, but far more kind and diplomatic.
I also need you to know how much she should have been recognized in this community for her tireless work.
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Hey, it's Aoife, your friendly neighborhood
#disabled
person, living w/
#chronicillness
&
#ChronicPain
. Today we are going to discuss what Not to tell disabled ppl, & please, join in, and add your voice!
A THREAD
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Checks why
#POTS
is trending, could it be people are talking about this chronic condition for awareness?
No, some nonsense article was published saying that people with POTS are too scared to stand.
I'm not making this up.
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I was not able to finish my degree because I can't attend classes in person. I was able to take some online classes, but not all.
Pretty sure all students at this uni are having online courses right now.
Why does it take a pandemic to have
#accessibility
?
#DisabledAndSaltyAF
So, you’ve probably seen mine and other disabled people’s pissed off tweets about the response to the
#CoronaVirus
.
You’re probably wondering why were
#DisabledAndSaltyAF
.
Here’s a thread as to why.
Join me, if you please...
1/?
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My actual doctor called me tonight to cancel our appointment tomorrow.
I was floored, we can't contact our Dr.s at my clinic.
She said we could have phone sessions. I'm happy, but again why do we have to wait for a
#pandemic
for
#accessibilities
?
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Is anyone else's body being exceptionally awful to them today?
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Here are some senators you can call right now:
Please RT: We need ALL hands on deck to
#SaveACA
. Call these senators right now & ask them to vote NO on the Senate health care repeal bill.
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White people, why are you all shocked about the white life lady?
We've known who these people are forever and what values they stand for.
We know they don't care about human lives, we know & many groups of people have been telling you!
What are you going to do is the question.
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Posted a few things about how to look for signs of
#ScarletFever
, which is going around the US right now.
#DisCo
,
#DisabilityTwitter
, please be on the look out for signs in yourself and others around you.
With all of the viruses going around right now, you don't want this one.
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6 Where are all the pieces about coping with living at home written by
#disabled
people who live like this all the time?
@teenvogue
?
@R29News
? Anyone?
We are literally experts on this and there are plenty of great disabled writers out here. Hire us!
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Prior Authorizations for medications are cruel, unnecessary and cause patients harm.
Just another part of our horrific healthcare system.
I have beyond had it with Medicaid denying a med I've been on for years now.
They told my Dr to try a different med & he needed to do a PA.
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PSA of the day, especially for those of you who call yourselves leftists:
When someone says something you don't agree with, the other person is not a psyop, a fake comrade, et al.
Also daily reminder that if you don't even remember disabled people exist, you lack solidarity.
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If you don't have
#diabetes
and are not a medical professional who works with diabetes, don't spread misinformation about it.
Feel free not to blame people with type 2 diabetes for things that can't always be fixed with diet and exercise for everyone.
Insulin should be affordable
Diabetes is bankrupting people. Meanwhile, cutting out carbs is zero cost and frees people from the need for insulin usually within days-weeks. Diabetes associations don't tell ppl this bc they're funded by Big Pharma. That's it, the whole sad story.
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This is another example of lack of
#accessibility
in newly renovated
@MTA
subway stations.
No elevator and this is what
#disabled
, elderly and pregnant riders are supposed to use in lieu of benches. All to punish homeless people.
#DisabilityRights
#HousingRights
#Disability
Can't sit down after teaching for hours just because someone wants to punish the homeless. Just the worst.
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We are more likely to be living under the poverty level than abled people. We are more likely to be sexually assaulted than able people. We are left out of these conversations, unless we start them.
#ThingsDisabledPeopleKnow
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3 It would be great if, when this is over, non-disabled ppl realize the challenges and difficulties
#disabled
ppl who can't leave the house face.
Help us with errands,resources,company.
Stop acting like we're doing this for fun.
As you can see, it's not fun!
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Like many of you
#disabled
and
#ChronicallyIll
friends out there, there are some times when I can't take it anymore.
I'm sick of being in extreme pain 24/7, I'm sick of the other symptoms that keep me from functioning day to day.
#Disability
#ChronicPain
#ChronicIllness
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I'm alive today because I had an abortion. For me, it was another part of
#TheCostOfBeingDisabled
. I'm alive, though.
Again, what is a life worth, what are our lives worth?
#youknowme
#AbortionIsNotACrime
#DisabilityRights
#ReproRightsAreHumanRights
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2
#Disabled
ppl who can't get out have always been called lazy, mooches, we're just on vacation, we're lowlifes because we might need to rest during the day.
We're sitting on the couch eating bon bons.
Is that what you all are doing now that you need to stay at home? I doubt it.
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1 Firstly, I absolutely empathize with every non-disabled person staying at home right now.
It's not fun at all, it's not a vacation.
It's isolating and not so great for one's mental health.
When was the last time you read a piece about this from a homebound
#disabled
person?
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I am disabled.
An abortion saved my health and possibly my life.
Even if I wasn't in this situation and decided on abortion...not an easy decision btw, I still have the right to have one.a
Abortion is a disability issue!
#DisabledAndProChoice
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Do I feel badly that Sia was suicidal after the backlash for Music? Yes.
Do I feel just as badly for the autistic person originally slated to play Music who was tossed away because Sia didn't couldn't handle working with an autistic lead? Oh yes.
I feel for the ppl she harmed.
Sia reveals she was suicidal and went to rehab after the backlash to her controversial ‘Music’ film.
🔗:
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Losing two chronically ill friends in a couple of days over a month.... I can't explain.
Other friends think they are on the way.
I love you all, please be extra good and kind to each other.
I hate this part of chronic illness life, I know you do too.
DMS open if you need.
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@kathygriffin
@EricMGarcia
Eric may be a man, but your assumptions are off
I know Sia is your friend and you care about her.
Please understand she did a lot of harm to the autistic community with every single step of the Music project.
Please listen to all of the Autistic people who are speaking on this.
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#Disability
PSA of the day:
When I got my hair trimmed last week,my stylist grilled me about why there is nothing to be done for my chronic illnesses, not knowing anything about them.
I told her I didn't want to try one invasive treatment with no guarantees & she got all shouty.
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7 Remember
#disabled
ppl who live like this when this
#pandemic
is over.
Remember us when you can go back outside.
Remember how much help you needed and help those ppl living like this in your communities.
#Homebound
#StayAtHome
#DisabilityC19
#Disability
FIN
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Abled people, stop being the
#disability
police in the parking lot, you can't tell who is
#disabled
and who is not by looking at them. Stop doing this to people. We shouldn't be going through this every single day. It's hardly this one case.
i honestly can't take this.
as a invisibly disabled person with an accessible parking permit, this... no.
not okay. never going to be okay. 😭
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It's been a while since I took a photo of myself. Here is a curly hair mirror picture! I'm trying to make the best of a hard day.
#DisabledAndCute
#DisabledCutie
#Disability
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Update 2: My person at patient services who handles my clinic issues is working on this. Therapist has offered to tell whoever needs to know what MH diagnoses I do have. I have to send in a form, hopefully will hear back about this next week.
Comments are now visible in my notes.
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The best news! The misdiagnosis is officially out of my medical records! No asterisk, it's completely gone!
I cannot begin to describe the absolute grief this caused me and I'm so grateful it's over.
Self-advocation is so important and I had to learn it over decades.
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Who relies on emergency exit gates to exit any station?
#Disabled
people with mobility and accessibility aids, people with children in strollers, people who are encumbered.
My station just became accessible literally about a month ago.
@MTA
what are you doing to your riders?
Emergency exit gates at three subway stations will soon take 15 seconds to open, MTA officials announced Monday, as part of an effort to crack down on the “super highway of fare evasion.”
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Hey fellow Jewish people.
Please be aware this Saturday in honor of Shabbat, some neo-n*zis have declared a day of hate.
Be more alert than usual if you are going to shul, going for a Shabbat walk, doing non-shomer things like going to the store.
Don't let it ruin your day.
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My heart is heavy.
My elderly psychiatrist is in the hospital with covid & covid complications.
It does not look good right now.
He's such a good doctor and a kind person.
Not sure what will happen to me, but I pray he will be alright and not be in agony.
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Non-
#Disabled
people, stop telling us what to call ourselves.
Stop telling parents of disabled children to call them anything else but disabled.
We are not handicapped, crippled and we should never be referred to as "special needs".
Disabled. It's not a bad word. Learn this.
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I had a good birthday! I also celebrated last weekend and am celebrating again this weekend 🥳. I feel very much loved this year and am grateful to everyone who gave me birthday wishes 🎂 . This pic is from last weekend
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Good news: My misdiagnosis is one step from being removed from my records.
Please send good thoughts and vibes.
Hoping it will happen sooner rather than next month.
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Flaring hard today,so PSA of the day:
#Disabled
friends & friends living w/
#ChronicIllness
/
#ChronicPain
,don't beat yourself up if you need to stay in bed a little longer some mornings. Your well being means more than anything else.
Let's rewrite that ableist script in our minds
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@tashakaminsky
She's always been one of my favorite heroes of the Shoah.
People are not taught about Jewish resistance if they are even taught about the Holocaust.
How do you teach about Auschwitz and not mention inmates worked together to blow up a few krematoria??
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#PSA
of the Day:
I don't know who came up with 'special needs', but it seems like the term was created for abled people who are uncomfortable calling
#disabled
people disabled.
Abled friends,
#Disability
is not a bad word. Disabled is not a bad word.
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Yes, everyone and their grandmother on
#DisabilityTwitter
have fundraisers.
People shouldn't be harassed for this.
A Thread. 🧵
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Dad update: Something happened during the endoscopy.
He's in the ICU, on a ventilator.
Waiting for more updates from my stepmom.
Please do not tell me what to do in this situation, that's between me, my dad and stepmom.
Please do pray and send them good thoughts. ❤️
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5) I wish I could "do nothing" all day, and take naps.
No, you do not. Daily tasks can be challenging for some
#disabled
people. It is very difficult for me to just shower, and doing this daily is very hard. We have things to do like you. Not everyone gets to rest.
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Please share widely!
Please keep helping
@SFdirewolf
@pipagaopoetry
&
@thellpsx
with the eSIMS for Gaza project!
Let's keep lines of communication open for these people who have no water, food, electricity or proper shelter in winter!
Never again is now!!
🍉 It’s been over a hundred days of relentless genocide in Gaza. Here’s the latest update from Crips for eSIMS for Gaza, a project in partnership with
@pipagaopoetry
and
@thellpsx
! We raised enough money so far to purchase 1500 eSIMS!
#AltTextPalestine
#FreeGaza
#FreePalestine
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5 There are plenty of activities that non-
#disabled
ppl can do that people like me cannot do.
If you are able, exercise to help w/ anxiety, make home cooked meals or bake things.
I can't do either of these things, not even simple meal prep.
Be thankful you can do these things.
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I have worth. My life matters. I am fortunate to mean a lot to the people in my life. I dedicate myself to helping others however I am able.
I'm
#Disabled
and am not disposable.
Abled people, do tell, what makes you more important than the rest of us?
#AreYouDisposable
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Dad has taken a turn for the worst.
Please pray, please send good thoughts,he needs them now. I said what might be my last I love you to him but I couldn't say goodbye.
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Not really okay right now.
Got some horrific news last night, still reeling.
I'm personally safe and okay, it's not anything like that.
Give the people you love in your life some extra love today.
Keep shining your light in this messed up world, because we all need each other.
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If you are a nurse who thinks like this, or the other nurses who responded to all of this mess, consider another profession. One that requires no interaction with other human beings.
Also, chronic pain patients are people.
Today may be Christmas but the ER isn’t Santa and we aren’t going to fulfill your wishlist of narcotics
Sorry to burst your bubble but Santa ain’t real
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#KnivesOutSpoonies
Being disabled or chronically ill is not a result of moral failure or not living well.
It's not something people can control.
It doesn't make you bad, less than, worthless, useless, or any of the other things you call us.
80% of ppl become disabled. It's life.
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Again
#Medtwitter
, when you write something here, anyone can see it. We know some of you have your private groups, but this is ridiculous.
You wonder why so many patients do not trust
#HCPs
.
#Disability
#chronicillness
#ChronicPain
#chroniclife
#Spoonie
#MedicalTrauma
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Do not assume that people can "just flee" from a situation like what is happening in Ukraine.
Do not blame people for not leaving because they are not able.
Sometimes people can't move when they need to, nor are they able to flee when they need to flee.
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Please RT!
Are you allergic to adhesives?
What do you do when you need IVs, go to the ER, et al?
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On Holocaust Remembrance Day add me to the list of grandchildren of Holocaust survivors who have been standing up and speaking out against the genocide carried out in our names against the Palestinian people.
Never again has been going on for over three months.
Stand up!
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First, do not ask
#disabled
people for their medical history. It's not like talking about the weather.
If you don't know about someone's health condition and don't even know how to spell it, keep your opinions to yourself about it.
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Where to start with
#KnivesOutSpoonies
Let's see, writing an article about chronically ill and disabled women having an online community like that's a bad thing is getting it wrong.
Chronic means chronic and it & symptoms don't go away.
What do Ableds conveniently get wrong about chronic illness in order to turn a profit, prop up supremacy culture, or just to be an asshole?
Use:
#KnivesOutSpoonies
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Her name is
#TheresePatriciaOkoumou
! Is there a fundraiser for her bail & legal defense yet?
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No matter how you feel about Palestine or Israel, the humanitarian crisis going on is horrific.
Do what you can do help out...give to org.s helping out if you are able, contact elected officials, do work to help online or safely in-person.
Take breaks from the news & social media
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I'm not staying silent as a
#Disabled
woman on
#WomenBoycottTwitter
day, and here's why: A Thread
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4) I know someone with a
#disability
, or
#illness
, they suffer more than you, and do more than you.
Do not compare ppl,you wouldn't do this otherwise. Don't do it to
#disabled
ppl. There is no Suffering Olympics. You are not an expert in anyone's disability or illness.
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I'm "muggle sick". Again, ppl with
#chronicillness
/
#ChronicPain
should not be allowed to get things like colds, & the flu. We have enough awful to deal with 24/7
Much love to anyone else who is
#MuggleSick
today. <3
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My cousin passed away yesterday and I found out another cousin of mine passed away earlier this year. If you have a chronic medical condition please get the routine care you need right now, if you are able. Please take care of your hearts.
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I don't want the man who said he felt bad for hot people in wheelchairs hosting Jeopardy.
I don't really want the woman who suggested people who don't follow modesty dress rules are the ones who get sexually harassed, are victims of SA, et al either.
They could have done better
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Trying to cheer myself up on this first thanksgiving without Dad. If you are struggling today I see you. ❤️
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