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TW: suicidal ideations, medical abuse Five years ago I was healing at home post-op after brain surgery. My surgery was a success but the whole process was miserable. My surgery was postponed the morning I got there. I was so thirsty waiting for hours with no fluids. 1/22
A nurse came by and took my temp and a half hour later I was told my surgery was being put off because I had a fever. I ask them to retake it, temp is fine. The nurse switched two of the numbers on the paperwork. So I wait even longer because they had called off the surgery. 2/22
I woke up after a successful decompression and fusion for an Arnold Chiari Malformation and cervical kyphosis that used my own bones for the bone graft. I thought I was dying. I could barely talk I was in so much pain. 3/22
Read 23 tweets
UPDATE: Today the college's president finally admitted to the faculty council that there WAS NO STUDENT SURVEY. Administrators were treating registration for fall as a de facto survey.
Can't tell you how many communications went out claiming "student demand" for f2f class.
here's what really bothers me about this: administrators repeatedly MISREPRESENTED STUDENTS. They lied to faculty and said that students were asked their preferences, then used the supposed "survey results" to claim that we must teach F2F because that's what students want.
I have to wonder how our students would feel if they knew that the college administration 1) didn't bother to consult them about fall plans but 2) claimed that they *had* consulted them and so the fall plans are face-to-face classes. I would feel doubly insulted. And angry.
Read 5 tweets
I'm working to uproot internalized ableism this year and trying to do some healing around the messages I've gotten around my chronic illness.

What is both sad and empowering is that this year marks 10 years since I was diagnosed with fibromyalgia.

It took 10 years to get here.
Hiding and minimizing pain and chronic conditions is part of survival for so many people. Regardless of how much people admire your skills, limitations in capacity means people implicitly and explicitly write you off entirely instead of thinking about accommodations.
What many people do not know about my story is that I had to take a leave of absence from law school because of fibromyalgia. After taking a year off, I came back, interned for the United Nations, completed clinical work in prisoner rights litigation, and graduated cum laude.
Read 12 tweets
It's disability pride month so here's a list of some of the ableist practices I hear in the academy all the time/have dealt with:
My grad school wouldn't postpone my enrollment for a year even though I was having brain surgery. So I enrolled in my PhD program 6 mo after (1/14)
My family moved me to school knowing I was still ridiculously sick and not fully independent after a decompression and a fusion. When I got there I had no stipend and no access to Grounds bc the uni forgot I was coming. (2/14)
I wrote the only guide to accessible teaching and pedagogy available to TAs at my uni. It was supposed to empower TAs to guarantee ADA accommodations. In it I explicitly stated it's a legal obligation to provide these (3/14)
Read 15 tweets
@KAnthonyAppiah - a philosopher I have tremendous respect for - is taking a fair bit of heat from #disabilitytwitter for his recent @nytimes "The Ethicist" column. But I'd like to defend him, because I think his advice - while not framed well - is basically right. /1
The outcry is centered around the idea that Appiah called the disabled person in question a burden. But he didn't. He called caregiving work - including the caregiving work often associated with some disabilities - a burden. /2
'Burden' isn't a great choice of words given all its connotations, but I'll stick with it. Because caregiving work *is* a burden. To say otherwise is to deny the exhausting, relentless labor of careworkers, labor done mostly by women, especially black and brown women. /3
Read 17 tweets
Chronic patients are allowed to be happy.
Chronic patients are allowed to dress up.
Chronic patients are allowed to look pretty.
Chronic patients are allowed to ask for help.
Chronic patients are allowed to talk about their health.
#DisabilityTwitter #DisabledAndCute
Chronic patients don't owe you proof of their illness.
Chronic patients don't deserve to be stigmatized.
Chronic patients don't deserve to be bullied.
Not all disabilities are visible.
Not all illnesses show visible symptoms.
Not all patients look ill.
Not all conditions are curable.
No illness deserves to be stigmatized.
Read 6 tweets
I've seen a lot of ppl stressed abt meal prep & knowing how long food will last. I've made a spreadsheet that calculates about how many meals I have left & highlights when ingredients are low. thread 1/5

Here's the template!
docs.google.com/spreadsheets/d…
#CripWisdom #CapMoon #disabled
I'm more inclined to imagine what my meals will be, so there's a 'meal planning' tab that auto calculates how many servings you have left & how long that will last in days & in weeks (I filled it in with random examples) 2/5 screen shot of a colorful spreadsheet calculating food & mea
But some folks may like to keep track of individual ingredients instead, so I made an 'ingredients' tab, that calculates how much you have left & highlights when you're running low on anything. 3/5 screenshot of a spreadsheet calculating ingredients
Read 5 tweets
1/ WARNING: POSSIBLE TRIGGER LANGUAGE, EVENTS or SITUATIONS
Read sad story last night about Dr. Bucci, 50 year old Phychology & Brain Sciences Dept. Chairman, at Dartmouth that committed #Suicide 11 months after a lawsuit was filed by graduate #students in his department. He
2/ was NOT accused of sexual misconduct, but named in the suit for knowing about the professors’ inappropriate behavior as the Chair.I share many of the same feelings he expressed to friends and colleagues in his emails before he took his own life like: the case was deeply
3/ personal; reputation had been damaged; physical health diminished; false portrayal of his actions; being blamed unfairly; allegations & process “unfair”; how can they ever undo what they did to me & #wronglyaccused. Similarly, how I had reported the #disability
Read 30 tweets
Here's my latest* update to my vetted collection of Twitter Disability and Chronic Illness hashtags. Please share it!

Thank you :-) Graffiti background. Foreground in black letters on a  white background to the left reads “Twitter Disability and Chronic Illness Hashtags”<br />
This collection is current as of 01.30.20, previous Twitter update 09.11.19.

There's a PDF version coming up this weekend, to be posted to my Kofi profile. I'll add the link toward the end when it goes up, after the questions, where you can also sign up for email updates.
This version has added

- community suggestions,
- mental health hashtags,
- Medical crowdfunding hashtags,
- and a section for cancer-related hashtags.
Read 84 tweets
Alright time for an updated Twitter #Accessibility guide!

Here are SOME easy ways to make your tweets more #Accessible:

- Use camel case in hashtags (capitalize the first letter of each word! #DisabilityRights)
- Turn image descriptions ON in settings and USE THEM ALWAYS!
1/?
- add accurate captions to videos; there are free apps to help!

- add GIF descriptions in your main tweet or the one immediately following.

- Avoid excessive emojis in your display name (it’s awful with screenreaders!)

#Accessibility #Disability 2/?
- Avoid special fonts in tweets, name displays, etc. (beside bad legibility, these are symbols w/ actual meanings that get said by screen readers instead of your intended purpose & it’s AWFUL to listen to)

- avoid tweets with extreme spacing/formatting (ex: “handshake” meme)
3/?
Read 4 tweets
“Special needs”... 6 times in under 60 seconds

“Take this burden off of the communities”...
I heard this last night.

My pain level was so high, I was wishing I had *safe* access to an emergency room where I wouldn’t be labeled as “drug-seeking” & discharged in worse condition. But I don’t, because chronic pain patients aren’t treated with respect or dignity.
So instead, I tried to watch the debate, as a distraction, in between pain so intense it was making me vomit and doing breathing exercises so I wouldn’t pass out.

I couldn’t watch the debate. The moving background made it inaccessible.
Read 25 tweets
#DisabilityTwitter #Madison disabled students need your help. Please spread the word & if you have expertise or clout also email the school board. Madison plans to buy a multi-million dollar facility to house (segregate) “alternative” students, aka disabled students, esp BIPOC.
Let @MMSDschools know that disabled students deserve to be integrated & included not isolated & incarcerated. This is the same district where a black disabled girl’s braids were ripped out & a black disabled teen was pinned & punched by 3 police officers. That’s just THIS YEAR!
Read 9 tweets
Life with a disability is expensive! Even the simplest things like changing a lightbulb can end up costing money if you need to ask someone to do it for you.

#DisabilityTwitter what are some of your extra expenses or hidden costs? How much does it cost you each year?
One of my biggest frustrations is that I need to remodel my living spaces to be accessible for my impairment, but can't DIY because of my impairment.
A few interesting articles on the topic forbes.com/sites/andrewpu…
Read 7 tweets
Let’s walk this #InspirationPorn out.

It’s common for loved ones to push us disableds to hide or “overcome” disability, esp for milestones. It’s not safe or healthy. He likely suffered doing this. His choice.

But why do ableds think standing is better? What are your tears for?
Years ago, an ex told their boss (w/ me present) “This is the woman I’m going to marry.” We were at his work on a date. I was too sick to dance. I was “lesser” for it. He controlled, isolated, abused me when I was too sick to pass, only loved me when I could. Common story.
There’s no context to the video @Trevornoah posted. The groom is an object. “He’s trying, how beautiful!” What about those who stayed in wheelchairs? Their unbroadcasted, non-viral weddings are beautiful. Is their trying or love lesser? Why is disabled suffering glorified?
Read 31 tweets
A THREAD: Do y'all know what "access intimacy" is? If you don't, may I suggest you start with @miamingus' excellent article exploring the term and its applications: leavingevidence.wordpress.com/2011/05/05/acc…

And, a story about what access intimacy looks like for me.
In short, access intimacy might be involved when, as a physically disabled person, your body feels safe with another human, because they 'get' your needs and/or limitations. It moves beyond "help" to true comfort, companionship, and understanding.
As @miamingus writes, "It has looked like relationships where I always feel like I can say what my access needs are, no matter what. Or i can say that I don’t know them, and that’s ok too. It has looked like people not expecting payment in the form of emotional currency... (1/2)
Read 19 tweets

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