Discover and read the best of Twitter Threads about #DisabilityTwitter

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Hello everyone,
2nd article for The Happy Warrior Substack✍️

Is my story of losing a good disabled friend during Covid

We can do so much better by our disabled brothers and sisters♿️
happywarrior.substack.com/p/a-eulogy-for… #disability #DisabilityTwitter #disabled #chronicpain #rt #Health
David was a really good friend that I had allowed over time to get away from me,

He passed away at the start of this year & I really regret not being there for him
#WritingCommunity #medtwitter @national_pain @PainNewsNetwork @speakingabtpain @maiasz @BlueBoxDave @libbyemmons
Life happens, people get away from you,
I should have been there more for my old friend,

The treatment of disabled got away over the last 2 years, w/ Governor Cuomo murdering thousands of disabled New Yorkers

& there will be no justice done
foxnews.com/politics/cuomo… #Disability
Read 7 tweets
🥳Ta-Da!🎉

1rst Official article for
THE HAPPY WARRIOR Substack is up

🤔Crime of the Century: How HBO fabricated, manipulated & outright lied about the opioid crisis ⁉️
happywarrior.substack.com/p/crime-of-the… #writing #WritingCommunity #writers #politics #film #review #healthcare #opioidcrisis
I prove by interviews, research & more @HBO allowed @alexgibneyfilm to stretch the truth & @ times outright lie to fit his narrative on the opioid crisis

happywarrior.substack.com/p/crime-of-the… @RexChapman @PainNewsNetwork @Narcocast @truthout @Filtermag_org @VICE @AdamLanceGarcia @CathyYoung63
Neither the science nor facts fit most of what Alex Gibney & HBO claims,

@LynnRWebsterMD is not a murderer or a drug pusher & if you are looking for one that made a fortune off of the opioid crisis

U should look towards Gibney's own big rehab experts

happywarrior.substack.com/p/crime-of-the…
Read 29 tweets
#FieldNotes/thread

Don't lose hope my friends - there're a ton of good doctors and nurses out there. They're just usually discouraged from communicating with each other, their patients or are are forced to relocate.

The "good ones"/best ones have always been the #whistleblowers
I'm not mad at the nurses that abused me, I'm disappointed that they're letting down their own ideals. You can always tell when a person's betrayed their own ideals, they broadcast that in everything that they do, even sub-consciously.
Totally Unrelated Sidenote: I reminded the rude 20-something guards at the hospital yesterday, prior to them kicking me about "#ColdReading". A topic I'd suggest they and LEO's look at before interacting with me again.
Read 19 tweets
i am extremely against opening up & broadening assisted suicide laws,

there are organizations out there more than comfortable walking a disabled person up that ramp,

stories too painful & too sacred for twitter,

the disabled don't need help to die,
the need help to live
one of the more horrifying experiences communicating with CPPS is watching a patient advocate & celebrate her plan to end her life due to lack of treatment

& on social media, instead of pushing back she pulled the rest of them into her orbit, just evil
Euthanasia is such a dangerous intoxicant,
you tell people there is an easy way out & when society tells them go die, they then say: OK

Euthanasia except in very strict circumstances is too dangerous for the desperate to keep around
Read 7 tweets
My mom couldn't believe that I haven't met the work credits for Disability (SSDI) despite working for over a decade in the US. I logged onto my Social Security portal to show her I'm short on credits. 1/4
My five and a half years in graduate school don't count as "work" because I wasn't an "employee." This is something that grad school robs away from graduate student workers. I worked 60 hours most weeks, taking on multiple part time jobs just to supplement my stipend. 2/4
Regardless, in the eyes of the govt I didn't work full time during that period, and apparently I didn't work nearly enough. This is why student unions matter. This is why labor negotiations matter. This is why higher ed reform matters. 3/4
Read 4 tweets
#DisabilityTwitter
#immunocompromised
#COVID19
#DeltaVariant #LambdaVariant

- A Thread -

I was diagnosed with CFS/ME in 1990 following a bad case of mono.
I fractured my pelvis that summer in a car crash...
I have never been the same, since.

My body doesn't work right. 1/
I finished high school by going part days and spending most of my time trying to push through my books on my own, in my room, in the quiet, laying down.

To this day, when I get sick, I have to lay flat most of the time. Sitting up hurts me and makes me ill. 2/
That was over 30 years ago - I spent the years 1990 - 1997 cycling through months of being housebound and periods where I was better...

Housebound months because I kept getting infections that I couldn't get over.

And it continued for years. My first major surgery was 2004. 3/
Read 16 tweets
The other side of @miamingus's brilliant concept of access intimacy is #AccessHostility: access grudgingly granted w/resentment, disbelief, demands for repeated explanations, proposals of alternate arrangements that never work. It can be even more toxic than access denied. 1/
#AccessHostility sounds like this: "Why do you need that?" "Do you really need that?" "What if we do this instead?" "We did this instead, that's OK, right?" "Why didn't you tell us sooner/later/with answers to questions we never asked?" "Do you still need that?" "Why?" 2/
#AccessHostility looks like this: Rolled eyes. Exasperated sighs. Looking at each other like, really, this again? Looking at you like, are you really going to make us do this? It looks like garbled auto-captions, withdrawn invitations, "just two steps" at the door to get in. 3/
Read 13 tweets
(RT please 💕)
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#DisabledArtists #DisabilityTwitter #BuyBlack Purple fingerless compression glove worn by me.Pink fingerless compression glove worn by me.
Size chart: Size chart for fingerless compression gloves.
Read 5 tweets
THREAD: Unfortunately, a new #lockdown means a sharp, inevitable rise in #domesticviolence suffered by women and children. ⁣

We have pulled together a Safety Planning Handbook for victim-survivors. Please share this where you can, we don’t know who it may help. 💜⁣ Image
THREAD: Having a code word allows you to raise the alarm to family, friends, carers, or support workers without putting yourself in even more danger.

#quarantine #dv #domesticabuse Image
THREAD: Notifying a trusted neighbour can allow them to alert the police if they hear any fighting coming from your home.

#SydneyLockdown #COVID19nsw #domesticviolence Image
Read 8 tweets
We have a serious emergency.

Late this afternoon we were contacted by a senior named “Helen”. She only had one meal left in her kitchen.

She called us for help and we are helping.

We will be using the last of our available funds to get her some much needed groceries. #YYC #YEG
We will hopefully be giving her enough groceries for an entire month so she doesn’t have to worry about having to choose between medications/food, food/electricity, food/rent.

Too many #Calgarians are being ignored and forgotten. Too many #Calgarians are afraid to ask for #help.
We need help. If anyone can help with a donation towards her food hamper, we will be here for about 2 more hours because we are shopping for four seniors tonight.

You can help by donating by any of the options ⬇️ #Donate #community #donations #DisabilityTwitter #BeKind #Alberta
Read 19 tweets
Seen it a thousand times☹️

#NobodyWillBelieveYou how pain, elderly, cancer, hospice patients & more can be so casually abandoned by once-trusted doctors

& Ur family, Normies & media will not believe U
nydailynews.com/opinion/ny-ope… #health #chronicpain #drugs #medicine #medtwitter
I know a telehealth company
they get calls all day from patients kicked off their meds

When its a medical professional they often say:
"I heard this was happening, but I didn't believe it.
MY DOCTOR would never do such a thing."

thefederalist.com/2019/03/26/bla… #NobodyWillBelieveYou
We see this phenomenon in the UK especially

folks rely completely on medicine to save their lives & take care of their families, its expensive

No one wants to think about how the medical system may be hurting them
pubmed.ncbi.nlm.nih.gov/28186008/#:~:t… #NobodyWillBelieveYou #health #medicine
Read 31 tweets
In less than a month I'm moving to start my new postdoc. And I'm just not ready to be visibly disabled in public again. For years I struggled with my cane and my neck brace and the unrelenting stares and nosy questions of strangers. 1/7
During the pandemic I could brace at home without the weight of those looks. I could accommodate myself well enough that I didn't need my cane and I could rest my hypermobile joints more throughout the workday. 2/7
It is crushing to be stared at all the time when you're in public. And I know people don't even realize they're doing it, but it makes me feel so unsafe. As a woman, I already feel unsafe in the wider world. But my mobility devices add another layer of paranoia. 3/7
Read 7 tweets
Hi #DisabilityTwitter remember when I was forced to drop out of grad school because I wasn’t accommodated with online part-time options? Well two weeks ago, I lost my Civil Rights case against Tulane School of Social Work. 1/?
From the way I was rejected, it felt like legal process and the attorney from the Department of Civil Rights, were informed by their “non-disabledness”.
I choose not to appeal because my attorney and I don’t believe the outcome would change.
Sometimes as disabled people, we make choices that those who are not disabled wouldn’t understand and the law wasn’t on my side.
So instead, I want to share my experiences as a disabled person who sued, and pictures and videos that I captured at school.
Read 51 tweets
DISABILITY HATE INCIDENT THREAD:

Last month, on the same day that our new BBC drama about the fight for #DisabilityRights was officially announced, I had to report my first #disability hate incident...
A taxi driver refused to drop me off at Euston Station's accessible entrance as the traffic was heavy & it would be "too difficult" for him to drive round. He instead insisted that I use the inaccessible entrance, as he had seen me stand & so "knew I could walk"...
When I told him that I can't manage stairs, he proceeded to tell me that it was MY problem not his. As if this wasn't traumatic enough, he demanded his fare even though the journey had been prepaid...
Read 8 tweets
I think much of why #StopTheShock doesn't permeate past #DisabilityTwitter is the same reason ableds don't understand why we're scared of assisted suicide laws - there's a belief in the fundamental goodness and heroicism of health and care workers, and our experiences break that.
We saw it a lot at the beginning of the pandemic when we said 'they will kill us to save you' and people got really, really angry with us for not being uncritically supportive of health systems and workers.

2/
I get it - people need to believe they'll be taken care of if something happens. They need to believe that, at the worst moments of their lives, they're not also going to have to be fighting abuse, ignorance, discrimination and neglect.

Our experiences are inconvenient.

3/
Read 8 tweets
Even the most cursory glance at the economic situation of people with disabilities in Canada paints a bleak picture. Disparities in income, wealth, and economic opportunities have widened since the beginning of the COVID-19 pandemic. Although the proposed....1/7
Canadian Disability Benefit has yet to become a law, it serves as an important reminder to analyze and understand the economic challenges faced by those with disabilities. 2/7
#disablethedifference #disability #disabilitystudies #disabilityinclusion #disabilityrights
Read 7 tweets
I hope everyone is acknowledging how poorly universities handled, are handling, and will handle protections for disabled students throughout the pandemic. 1/6
Some things to think about when discussing uni responses:
1. Unis have never been safe spaces for disabled people, accommodations have been denied to students long before, and will be long after - how do we enact change? 2/6
2. Nowhere is safe for disabled people. Telling us to leave academia is not an option. Regardless of the sector - capitalism is built on ableism. We need solutions in every sector. 3/6
Read 6 tweets
I want every med student to pair with a disabled person for one medical visit. Where you follow the person as a fake family member, witness the level of dismissal they go through, and see the amount of work they're given upon leaving to sort out tests, follow ups, and meds 1/3
And then I want them to try to sort out one insurance issue. Just one. I want them to see the hours it takes to navigate hospital billing, specialist offices, CPT codes, pharmacy reps, compounding facilities, patient copay programs, and infusion experts. 2/3
You have to know that when we enter your practice, we are already run ragged by a system designed to kill us. And we need the least amount of work you can put on our plates. 3/3 #MedEd #MedTwitter #DisabilityTwitter
Read 3 tweets
The good news: my symptoms of fatigue, fainting, low BP, GI issues, and brain fog aren't due to blood flow issues to my brain. And my nerves are mostly intact. 1/5
The bad news: this means all the above symptoms are secondary, not primary issues. Aka they're not caused by primary POTS, but they're secondary symptoms bc of #MCAS. 2/5
And there are no approved treatments for #MCAS specifically for the disorder. And the top specialists don't take insurance. And there is a whole lack of research. So I've essentially exhausted all the treatments I can afford. 3/5
Read 5 tweets
Tomorrow I find out if I have small fiber neuropathy, arthritis, if my orthostatic intolerance has gotten worse, if my fusion is continuing to allow proper blood flow to the brain, and if I have any other new diagnoses. 1/6
I also find out if I can finally, after 5 years, secure pain meds once again. If I can benefit from IVIG. And if I need to start taking more intensive MCAS meds. Along with potentially starting new treatments for new dx. 2/6
I consider myself a pretty direct, rational, and well informed patient. I have my questions, my talking points, and I'll be clear about follow up actions with my Dr. I waited a year for this. I need answers and care. 3/6
Read 6 tweets
A 🧵 on my reality of getting disability accommodations in medical school. Hoping this helps others in the same boat and also everyone else, especially those of you in #meded, to realize what students actually go through. 1/

#MedStudentTwitter #DisabilityTwitter
I first learned disability accommodations were even an option for me last fall. I then took months debating whether I even deserved them. It then took months for my dr to complete the required documentation. Then another month for the disability office to process it. 2/
My first intake appt was YESTERDAY. That's 8 months after all this started.

In the meantime I was struggling, but kept being told no one could help me until I got the disability accommodations. I don't know how I made it through this year. 3/
Read 10 tweets
1/7 🧵 Using #PowerPoint in your virtual meetings? Here’s a short thread on making your presentations accessible.

1) Use sans serif fonts, no smaller than 16 points, and make sure there’s a high contrast between your text and your background colour.

webaim.org/resources/cont… A graphic showing a monitor screen on an orange background.
2/7 🧵 2) Title each slide to help anyone navigating through your presentation quickly. If you can’t fit a particular topic on a single slide, use ‘[Slide title] part 1’, ‘[Slide title] part 2’ etc. rather than repeating or skipping a title.

👍 #accessibility #a11y #PowerPoint
3/7 🧵 3) Add #AltText to your images, charts and graphs, so they can be read by screen readers. Right click on your image, and choose ‘Format Picture’ then ‘Alt Text’. You can add a brief title, followed by a more detailed description.

👍 #DisabilityTwitter #accessibility
Read 7 tweets
I want to take a moment to talk to you about the frustration and what it’s like to not be able bang out things that are inside your head because you have to wait for a typist. #DisCo #DisabilityTwitter
First of all nobody believes I’m actually the one writing because I need the typist so they assume oh she has brain damage the typist is the one actually writing
The next one thing it’s because of how fast the media cycle moves if I need extra time or what we call an accommodation it’s too late for cycle has passed and my staff is irrelevant
Read 8 tweets
Being a #disabled #nurse is hard - a 🧵 I might delete because this is uncomfortable to share.

I have had #Lupus and several other autoimmune disorders for 20 years and it is frustrating, painful, and at times debilitating.
I don’t talk about my health or what I go through openly because I am afraid that ppl will withhold opportunities or overlook me because I am “sick”. I don't even share how sick I am with most of my family.
I have pretended to be well a lot. Why? Because many nurses and healthcare professionals are ableists. If I don't pretend to be well I am criticized and marginalized. I get treated like a burden when I need accommodations.
Read 12 tweets

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