Grayson (he/him) 🏳️⚧️🇵🇸
@GraysonGoal
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All views mine | Leftist, polymath, writer, gamer | DEI, accessibility, health equity, sex-ed, changing the world | 🏳️🌈♿️🏳️⚧️🍉🇵🇸 #SJIA #Rheum #AuDHD
Stolen Shawnee Land (SE OH)
Joined March 2009
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My best friend has spent the last 13 months fleeing, hiding, and now legally protecting herself from her abusive ex-partner.
A 🧵
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She is incredibly ill. SPS is a very difficult disease.
Instead of framing this as overcoming adversity — which is very 'inspiration porn' — we should instead recognize that her body is going to make her pay for ages for this performance.
This was a gift to her fans & country.
Doctors: sounds, extreme emotions, lighting can trigger a crisis
Sensasionalist press: Céline Dion has lost her voice
Random accounts: Celine Dion on her deathbed
Céline: hold my Eiffel Tower
She's a fighter, she's a queen and she'll always be the moment
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Wait, you mean...
*looks around*
Banning straws does fuck all to help the environment WHILE harming us disabled people?
🤔🤔🤔
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My new cardiologist: "I'm not taking you off Ritalin cause that's how people lose their jobs."
Also: "I'm not taking you off testosterone either. I mean, that's who you are."
Also also: "I appreciate you thanking me, but I don't deserve a gold star for doing my job, kiddo."
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Folks, please talk with your loved ones & friends about your final wishes —
Our 46-year-old neighbor passed away unexpectedly from a heart attack on the 8th.
Let’s cover some of the things you need to consider and speak with others about — especially if you live alone.
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As a trans person, I plan to keep calling them Facebook until they prove their name change via legal documents
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BE CAREFUL
Black charcoal can make medications like birth control and antibiotics ineffective.
Charcoal is what they give you in the hospital to get out toxic things you've consumed. Don't forget it.
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The fact that she wanted to do this, to share herself with us like this despite knowing she'll be paying for it?
As a fellow disabled person, that is infinitely more beautiful to me than any inspiration porn-ladden ideas could ever be.
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There are meds and other treatments that can help, and when one finds the right mix it can look like a miraculous recovery.
But, it isn't.
The energy rationing, pain, and exacerbated symptoms she's going to deal with will likely mean withdrawal from public life again for a bit.
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Since we're all talking Roe v Wade, abortion, and reproductive justice...
Here's a thread 🧵 of shit NOT to do or say right now.
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2. Don't call abortion a "woman's right to choose."
I'm a transgender man. I have a uterus and could easily get pregnant.
This is about my bodily autonomy, too, and reducing the situation to only cis women ignores too many of us - AND misgenders us.
Don't cause more violence.
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"We do overcome some things. But the things that we’re overcoming are not the things that you think they are. They are not things to do with our bodies."
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I seriously adore this man who just spent 30 minutes uninterrupted with me.
And spent time before coming in brushing up on MCAS, EDS, and orthostatic hypertension - even though he's pretty familiar with them.
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Gentle reminder that for many disabled and chronically ill people, our communities only exist accessibly on social media.
Deleting FB, IG, and more isn't a solution. It just leaves more disadvantaged people at risk.
Demanding accountability is the inclusive way forward.
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1. Do not create inaccessible resources.
If you're sharing photos, charts, etc., put alt text on those for those of us who are visually impaired, blind, have migraines, struggle to read text on images, etc.
Don't be inaccessible while talking about lack of access, k?
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Look, I used to have a legit phobia of death. I know that planning for this can feel daunting and disturbing.
But it's an act of love to give the people around you clarity, direction, and ease in the midst of loss and grief.
Don't forget that.
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I need folks to remember this thread when you think your disabled loved one is faking.
Many disabilities are dynamic and unpredictable, save how we pay for engaging in activities.
Tinu's thread highlights a common issue.
Sometimes your family thinks
because you CAN do something
it means you SHOULD do something.
Today I did a thing so I can spend a week showing what it costs me.
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4. Don't act like a person's interest in this matter is only based on their bodily functions.
Cis women can be interested in this if they have no uterus or struggle with infertility. Trans folks without a uterus can be concerned RE bodily autonomy.
(See 3 for more)
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3. Don't ignore how laws on bodily autonomy affecting trans folks are tied in here.
This is part of what folks like Lorde have meant when discussing the interconnectedness of oppression.
Upholding any part of the kyriarchy means upholding all of it.
Not only can we not afford to do so, but it's also inhumane.
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1) Make sure people around you at least know the names of people in your family.
Knowing that our neighbor’s parents used to be teachers made it easier to find them on social media and share their information with emergency personnel.
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(Also, just in case anyone is like "WHAT" - Yes, I know Celine isn't French. She's Canadian, specifically Québécois.
Given the history, Quebec has a long & rich connection with France. Doesn't mean this isn't about gifting her country, region, & fans with love.)
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Happy International Non-Binary People's Day!
Remember: there is no one way to be non-binary.
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3) Likewise, if you don't have a will, get on that stat.
You need to outline who should be in charge of your estate (with their consent) and how your assets should be distributed after your death.
Because people get fucking petty.
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One way you can handle this is by creating a one-page emergency contact document to share with neighbors and close local friends.
Setting up your ICE contacts on your phone is also helpful.
Label who is your first go-to contact, who is a parent / family member, etc.
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That said, consider actually connecting folks with each other.
C’s dad had an incorrect number for us, and it made it hard to connect — something we weren’t able to do until yesterday, which is over a week after C passed away.
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Since a pic isn't accessible to many people who might need this:
Into The Spiderverse has a lot of flashing lights at
-title screen
-last 10 min
-sprinkled in the rest of the film
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While you're here, Tinu is incredibly ill.
She has done SO MUCH for the disability community.
Please help if you can:
Again, disabled and poor people do not break the bank for me.
But if you are in a position to donate PLEASE you are my last hope not my 1st.
I am still trying to cover the last $1700 before August 1st & late fee issues.
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2) If you don't have Advance Directives, fix that.
Then, make sure that they are signed, in a specific spot in your home, and uploaded to your EHRs.
Anyone who would be a power of attorney should be in your ICE contacts with a note highlighting that.
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For example, C’s mom had a hell of a time when her own parents died due to some shitty family and a lack of a will.
My grandpa also passed away without a will, and, when he died far too early, it sent my family into poverty.
Wills help make life easier for you & loved ones.
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4) Make sure that you review any beneficiaries on insurance, etc., regularly, too.
If you’ve broken up with someone and need to replace them, do that ASAP.
Don't wait until later — life is fucking unpredictable.
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@Penelopy_s
The point is that he sees me as a human who has a life to live. I can't do that without the meds that help me stay (or want to stay) alive.
If more providers approached the situation with -that- in mind, there would be less harm caused overall.
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7. Think before you share tweets.
-Does this tweet contain accurate information, or am I contributing to doom scrolling or panic?
-Is this harmful to folks in the transgender, disability, BIPOC, and additional communities?
-Do I need a break?
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5) Do you have pets? Talk to people about who will take care of and even adopt your pets if something happens.
I'll give you a very real and timely example of why you need to do this.
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A will should also include any funeral and burial / celebration of life wishes.
That might include where you'd want that held, if you want something somber or celebratory, what kinds of readings or songs you might want, any religious aspects, etc.
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@JFKairport
@jilly_peppa
This is like thinking someone's legs would magically be unbroken after a rogue flight attendant forcibly broke them.
This is how Jillian gets around. This isn't a wait and see situation.
Goddamn.
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Muting the thread since it went viral.
But, I'm begging y'all to read my entire threads before correcting / dunking on me.
I address a lot in threads, including what you think is wrong.
And correcting folks has me feeling like Peter in Office Space with the damn TPS reports.
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We've been fostering C’s dog, Josie.
She’s a sweet dog, but she's really struggling. He was her whole world, and she is used to getting all of the attention, eating human food, and a lot more that isn’t necessarily easy to work with when we have our own dogs used to our rules.
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Several other friends have offered to adopt her, but backed out at the last minute due to grief, previously losing pets, or realizing she needs vet care.
(She's going Monday, thanks to a local nonprofit because we don't have the money to take care of a third dog.)
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If the Covid vaccines that get approved are live vaccines, you need to understand that a ton of people will still be vulnerable -
People with many disabilities/chronic illnesses CANNOT get live vaccines due to their conditions or medications they are on.
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She had an overnight last Sun with a family who was going to adopt her, only to come back to our place Monday b/c they weren't ready.
It's okay that people pulled out. I don’t blame them for it… But it creates extra stress & unpredictability, which Josie doesn't need.
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Fellow w h i t e people
No one cares about how you think Will Smith didn't need to slap Chris Rock OR how you think folks need to learn to take a joke
Read
The
Room
And
Be
Quiet
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7) This is absolutely optional, but you might consider writing letters or recording messages for your loved ones to read or listen to after you’re gone.
Many grieve hearing someone’s voice; voice messages can comfort your loved ones and let them feel more connected with you.
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6) Do you have passwords for your social media, email, bank accounts, etc., in a safe space that you can share with others if needed?
If not, consider either getting a fireproof safe and having these documents in there OR digital options.
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I use LastPass, which allows me to share passwords at any time with others.
It also has a way to designate someone who can access passwords if something happens to me.
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I'm just a trans boy standing in front of specialist providers, asking for them to recognize that trans people exist, have sex, can get pregnant, and *must* be included in discussions of reproductive health.
Especially when disability is a focus.
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And, honestly, we also don't need the stress.
We love her, but this can't be her permanent home. Her legs can't handle stairs well, and we've got far too many.
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8. It's tempting to focus those needing abortions in emergent situations, such as those who would otherwise die without an abortion.
It's vital that we don't forget stories like those from my anonymous friend.
Any reason for abortion is enough.
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The 'I'm Dead, Now What! Planner' (available online) or another similar end-of-life planner
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I also want to make sure to note that taking steps like these is especially pressing if you are no contact with, say, your parents due to abuse.
My abusive & transphobic mother does not need the opportunity to exact power over me, even in death.
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One of C's friends is willing to take her IF her health issues aren't costly to deal with.
If they are? I'm not sure what we're going to do. C's family is older and can't take her.
She might have to go live with someone at this nonprofit at the end of the day.
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6. See the below tweet
Take time to learn about the laws in your area.
If you're new to this work, you may not realize some of the laws that pre-date Roe v Wade make even 'liberal' states ban abortion.
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Can we talk about how sayings like this reinforce the notion that illness or disability is a punishment?
And how it's especially harmful to see medical professionals post this kind of stuff?
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Yeeees
@GraysonGoal
I would also like to add "stop blaming 'religion' for this." It's not "religion." Abortion bans actually infringe on the religious freedom of Jewish people who can become pregnant, for example. It's Christofascism that's contributing to this heinousness.
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Consider, too, how you’d want folks to deal with any social media accounts.
Do you want them to stay up so that people can still access shared photos and posts?
Do you want them deleted?
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Just a reminder that a disabled dude is president.
(Yes, a stutter is a disability.)
#CripTheVote
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Y'all also need to know that just about every "crisis line" WILL CALL THE POLICE ON YOU.
Trans Lifeline won't, but their operating hours are few right now.
There are a handful of others that I've seen, and they're all based on peer support, mutual aid, or de-escalation.
I am begging families not to call the cops on their children when they have a mental health episode. BEGGING. Even if its to "help" them. Please. Lives are at stake.
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Um?
- Leprosy
- Typhoid Mary
- Laws institutionalizing disabled folks to protects ableds
- HIV/AIDS and other STIs (esp when it comes to sex work and ostracizing sex workers)
- The historical and current blaming of ethnicities and races for sickness they aren't carrying
For thousands of years, disease pathogens have spread from person to person. Never before have carriers been blamed for infecting the next sick person. That is a very dangerous ideology.
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or another online will creation tool
It is my understanding that you need to have these forms printed, signed, and notarized for them to be legal.
I'm not a lawyer, so consult one if you can.
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Some sites and items that can help:
@LastPass
or a similar online password management system
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For folks who don't know -
Almost every country has ableist laws on the books barring the immigration of folks with a variety of conditions.
Some are explicitly called out. Others are excluded through the notion that folks would put too much of a strain on the health system.
My spouse and I would love to move out of the US. But, because we’re disabled and my spouse is HIV+, we likely can’t.
Did you know Australia is one of the 48 countries that has travel restrictions against HIV+ people?
Australia still allows some HIV+ people if they are on
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I know that financial resources can limit what someone is able to do, which is why I've shared free resources here.
You can get something notarized at banks or credit unions for a couple bucks. You would need to have the others signing come in with you, though.
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Y’all should be attacking large plastic producers like companies who use far more plastic than required in packaging.
But capitalist, individualist, and ableist ideals tell y’all to attack the disabled people who literally can’t live without these straws.
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Thanks all for all the love and well wishes! I've been working in the disability space for over a decade and work on a number of research initiatives in addition to giving presentations, sharing sex ed facts, etc. Feel free to check out my work!
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That's why I included some very specific LGBTQ+ resources here.
If you need more, I highly suggest checking with local LGBTQ+ centers to see if they have a collection of end-of-life planning resources.
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Download and Complete Your State or Territories’ Advance Directive Form (in English and Spanish)
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"Your medications and assistive devices are what's making you sick - not your dozen chronic illnesses!"
#HowToPissOffDisabledPeople
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I turned this list into a Substack post
Featuring wisdom + info from
@IMissCarrie
@_Vampire_Jesus_
@autogynamelia
@bjcolangelo
@BarbByrum
@AudreLawdAMercy
@MaryBadThings
@leahbarteldes
@chadloder
and more.
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Btw this is Josie, C's adorably precocious black and white dog.
She likes to think outside the bun, as evidenced by the fact that she broke into our hidden garbage can to dig out the Taco Bell trash from my lunch yesterday. 😂
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Left: me, seven years ago today
Right: me, five minutes ago
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Caring Conversations Workbook (in English and Spanish)
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LGBTQ+ Advance Care Planning Toolkit (in English and Spanish)
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For everyone in my mentions who doesn’t know about the issue, read the following articles
The bendy plastic straw was originally used in hospitals and vital for people with disabilities -
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I cannot reiterate this enough:
I'm not mad C didn't have these things in place, but I know he could have - that you can.
Planning is self-care.
It is also a major act of love, giving friends & family clarity, direction, and most of all ease in the midst of loss and grief.
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Advance Directives for Transgender People
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The Conversation Project from IHI
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I also want y'all to know that the signs of a heart attack might not be what you've been told or seen in media.
C's only real symptom was vomiting.
Take a moment to learn about the many symptoms someone might have, and use that knowledge to help you consider when to seek help.
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It's great if you want to leave various social media.
Just don't get on a high horse and act like it'll solve anything for anyone else.
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BITCH GOT IMPEACHED ON INTERNATIONAL MIGRANTS DAY
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WHAT THE ACTUAL FUCK
"If you force the kids to push their bodies until they are in tons of pain, over time their brains can learn to ignore it...“
The more you think about pain, the more it hurts, an expert hypothesizes. To help kids with a rare pain syndrome, he's offering a paradoxical cure:
"Put them in pain to get them better."
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Don’t make jokes that have health issues as the punchline.
A big bowl of ice cream isn’t gonna give you diabetes.
If you’re indecisive, you’re not bipolar.
Stop being ableist asshats.
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Also! If you're looking for affirming providers, the following orgs are super helpful in the US!
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C's elderly parents live 7 hours away & aren't sure when they can come here to work thru estate & legal things.
That's why I've also suggested involving local-to-you folks. The folks here can take care of a decent amount & ease what the family is going through as much as we can.
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You also likely have resources where you live that can help with some of these things, if needed.
But they're often very busy, underfunded, and may be hard to access.
Remember: We take care of us, of each other. That applies even in death.
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The way
@Imani_Barbarin
came at me in closing her
#axecon
keynote today talking about internalized ableism, y'all
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"Israel is a democracy - the only democracy in the Middle East - in the exact same way that America is the oldest democracy in the world."
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Instead of telling disabled people they’re expendable or can’t use straws they depend on, why aren’t y’all throwing money at teens inventing ways to clean the ocean?
🤔
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I'm not saying let's not ask why Lizzo uses an ableist slur in her new song
BUT
There are a lot of recent songs that have ableist BS in them but don't seem to be called out the same way some of y'all going after a prominent Black woman
#DisabilitySoWhite
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Ken Jennings has deleted the tweet now that news outlets are finally talking about it.
Has he apologized once? Not yet.
#HotPersonInAWheelchair
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Holy cow, best example of fat shaming and part of why
#DoctorsAreDickheads
[description coming]
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This...
But also, for those of us who are disabled, Amazon is how we can get what we need, so it's okay to cross that line if you need to.
We have to build these accessibility thoughts into our calls to action - otherwise, ableism reigns.
In protest of exploitative working conditions, workers at Amazon warehouses are withdrawing their labour on Amazon Prime Day. Workers will staging a walk out during Prime Day, on Monday 15th and Tuesday 16th July
Do not scab
Stay away from Amazon
Stand with your fellow worker
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@JortsTheCat
Disabled and high-risk folks like me were told to go get our own groceries during the worst parts of the pandemic. We're constantly receiving feedback that our lives aren't worth protecting.
Taking 2 seconds to acknowledge this and the privilege issues at play is vital here.
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No 👏🏻 one 👏🏻 needs 👏🏻 to 👏🏻 apologize 👏🏻 for 👏🏻 asking 👏🏻 for 👏🏻 accessibility 👏🏻 👏🏻 👏🏻
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From an F size chest to uh not lolol
My neck is already so happy
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Dear fellow chronic illness and disability folks,
I understand the impetus to use comparisons to show people how sick you are, but you need to stop comparing conditions to HIV/AIDS (or, indeed, any other condition).
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Y'ALL I MADE IT THROUGH WOMEN'S DAY WITHOUT ANYONE MISGENDERING ME FOR THE FIRST TIME!
I'm legit crying over it.
Thsnk you for getting it. Finally.
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