Discover and read the best of Twitter Threads about #disability

Most recents (24)

We’re less than a week into National Disability Employment Awareness Month. The stories of companies talking about the value of diversity, equity, inclusion, and access are everywhere.
The truth that far too many of us in the disability community know however, is that for many of them, the goal is optics over action.

-A woman went viral on @tiktok_us after exposing her employer for not accommodating her for her dyslexia and ADHD, The @dailydot reports.
-A worker with a back condition was fired from Virginia-based Resource Metrix after she requested an ergonomic chair, according to the @USDOL in a story published by @newsobserver
Read 11 tweets
Single aisle #airplanes ✈️don’t have accessible toilets. It’s inhumane for disabled ppl to have to hold their bladder and bowels for any amount of time. On my flight home from Lihue, HI, total time to hold would be 8 hrs (7hr flight + 1hr board/offload). U try it. Good luck…
Thankful for my sis @meet_virginiaaa who was there to pick me up, transfer, and pull up my pants. We made it thru that tiny 24” door but scraping up my legs. Every person I watched on the flight turned sideways to barely make it thru the door. This isn’t just a PwD prob…
@meet_virginiaaa isn’t always with me and usually I travel solo. I’m not prod to say I made it 7hrs from SFO to LIH. I have to fast starting the night before and take anti diarrhea pills to stop everything. It stresses me out. I typically don’t eat or drink on the plane…
Read 9 tweets
In the very beginning of the pandemic, I created the hashtag #multiyearpandemic

2023 is approaching and we are seeing it span out in reality.

1) #COVID19 is nowhere near endemic status.

2) Mathematical modeling 👉 it’s going to take ~10 years to reach it.

#CovidIsNotOver
This highly contagious virus has all of the necessary ingredients to ensure long term staying power. Millions will be disabled for life.

#COVIDisAirborne #asymptomatic #chronic #chronicillness #disability #longcovid #LongCovidKids
Here are the equations, if interested.
Read 5 tweets
SEMINAL ARTICLE re: #ICD11 Chapter 08 - Diseases of the #NervousSystem 🧠

Study Title: The #leptomeninges as a critical organ for normal #CNS development and function: first patient and public involved systematic review of #arachnoiditis (chronic #meningitis). @PLOSONE
LINK: journals.plos.org/plosone/articl… @PLOSONE

Abbreviations:
#CES- #CaudaEquina Syndrome
#DLM – Diseases of the #Leptomeninges
#ESI- #Epidural Steroid Injection
LM - #Leptomeninges
#LMF- #Leptomeningeal #Fibrosis
#NAA- #neuraxialanesthesia
PSR- PRISMA Systematic Review
#SAH- #Subarachnoid Hemorrhage
#SAS- #Subarachnoid Space

Key Findings:

1. A varyingly described, and poorly characterized #CNS disease called #arachnoiditis (aka #adhesivearachnoiditis) was exhaustively systematically-reviewed for the first time.
Read 27 tweets
Wow, we’re at 2,999 followers. Incredible! How did we start? June 2016, we decided to set up a deaf-led therapy service, via zoom & f2f. Why? No other service was doing online remote therapies, however it made sense to reach deaf people in places that no one else could.
Interest increased, reviews were good, and NHS & health boards took notice of #DeafTherapiesWork #DeafTherapy Awards were given #bestdeafbusinessstartup #DisabilityEnterpreneurWinner @SteliosPhilFdn £30,000 prize money @LeonardCheshire @ndawards #2deafwalk injection of £30,000.
What did this do? Raise our profile, sustainability & trust developed. We delivered low-cost & accessible therapies to hundreds of deaf people all over the UK. @royaldeaf doubled the £30,000 from #2DeafWalk to £60,000 to create #TalkMore BSL helpline.
Read 14 tweets
NEW from me: #Longcovid was a preventable tragedy. 1/ webmd.com/lung/news/2022…
In spring of 2020, #disability advocates, including me & @rndNumGen warned that a wave of virally-triggered chronic illness would follow the #covid19 pandemic. washingtonpost.com/health/could-c… 2/
We knew because it had happened to us - a 'mild' viral or other infection turned into years of the symptoms that #longcovid patients now know all too well. 3/
Read 17 tweets
Journalists on the #longcovid and #disability beats: Protest scheduled outside White House on Mon 9/19 at 12pm. Dozens disabled by #mecfs and post-viral illness may be arrested as they sit down to rest. Great visuals, and a window into a major story. millionsmissing.meaction.net/protest2022/
This is a direct action in the style of how ACT UP raised the alarm about HIV starting in the 1980s. New pandemic, similar playbook: putting bodies on the line to calling for more medical research, clinical trials, education campaigns, and economic support for patients.
#MillionsMissing refers to millions of #mecfs patients missing from their lives, and millions (billions, really) of dollars in lost wages missing from the economy. Millions more patients could go missing due #longcovid. What's needed is an urgent, ambitious national action plan.
Read 5 tweets
@DavidSpergel @SimonsFdn "Yet Black and Hispanic workers only make up 17 percent of the U.S. STEM workforce, compared to 28 percent of the total workforce." That "math" is based on USA Census data which is a "physical inventory" so it doesn't take into account the effect of illegal..
@DavidSpergel @SimonsFdn immigration. So if we wake up tomorrow morning & Hispanics are 50% of our population because they walked across our border, are they even more "underrepresented" in the USA STEM field? 🧐
@DavidSpergel @SimonsFdn I'd like to call your attention to the SUNY RF job posting for Admissions Counselor, Simons STEM Scholars Program on the Stonybrookmed.edu website. It states: Reporting to the Executive Director of Admissions (or their designee)..
Read 42 tweets
A while back I wrote about my medical binder and what I bring to appts as an individual with a complex, multi-systemic genetic disorder. Some people noted that a model could be helpful. As promised, here's a thread on my medical record binder with a model at the end. 1/17
On the first page you'll see a Table of Contents. I keep this at the start of my binder to remind myself where I've slotted in all my records, and I use colored divider tabs between sections and doctors. 2/17
I begin with a Short Records section. First you'll see a Meeting Notes template for new appts. It prompts you to fill in info about what's going on, your case history, and what you've tried in terms of therapeutics. I find this helps me advocate for myself with new drs. 3/17
Read 17 tweets
Ich sage Nein zur BILD.

Hallo ihr Knuffis,

heute bekam ich eine Anfrage der besonderen Art, die ich euch nicht vorenthalten möchte. Die #Bild wollte mich für eine Reportage bei BILD TV.

Hier nochmal die Anfrage und meine Antwort im Wortlaut: 1/x

!B

#keinmillimeternachrechts Ich sitze im Garten vor ein...
Anfrage:
“Hey Chris 😊

wow was soll ich sagen! Du bist eine sehr interessante und vor allem sehr inspirierende Person. Schon länger verfolge ich deinen Block und teilst wirklich sehr viel und nimmst kein Blatt vor den Mund. 2/x
Gerade das Thema Sexualität mit Behinderung finde ich unglaublich spannend. Aber vor allem auch: WICHTIG! Wichtig, dass solche Themen viel offener in der Gesellschaft besprochen werden und als normal angesehen werden! 3/x
Read 21 tweets
See display name. Rent & utilities. Disabled & out of work, not getting disability benefits yet! I literally have nothing without help.

$longbongsilver
#showupforwishes #crowdfund #MutualAidRequest #disability
@scott_satzer I'm trying amount in display name for ease.
@TheAgentNDN Since I'm falling further behind I changed my display name.
Read 12 tweets
How’s your #mentalhealth today?

Ask yourself and ask a friend. #askthequestion

#disability #mentalhealth #identity

Collect: opensea.io/collection/192…
Watch:
Read: 1924piecesofme.com
What do you see? 101/1924 790/1924 624/1924 579/1924 ImageImageImageImage
#askthequestion I’ll go first

I’m feeling frustrated to realise that #Twitter shortened a url and I didn’t notice, shared a dead link to my #nftart a few times. Proof: not a #bot!

Feeling anxious about some things next week. Trying not to lose myself.

How about you?
926/1924 926/1924
Offline #answer, shared with permission: #askthequestion

‘I’m #struggling a bit in all honesty. I’m just so #tired all the time and having trouble bouncing back from the whole #heatwave after #heatwave situation’
#disability #identity

Collect: opensea.io/collection/192…

101/1924 Image
Read 5 tweets
On 8/11, the @CDCgov revised #COVID19 guidance as to “not disrupt daily life." These changes are reckless.

18M+ w/ #LongCOVID experience significant daily disruptions to life. This revision indicates those casualties are acceptable in exchange for comfort. #StoptheSpread 🧵 1/7
We are calling on the @CDCgov to recognize the long-term, systemic health & socioeconomic impacts caused by the disability faced as a result of #LongCOVID & its associated conditions, a result of the initial #COVID19 infection.

Preventing infection prevents #LongCOVID.
2/7
The U.S. has seen over 1 million deaths due to #COVID19 & 1 in 5 infected develop #LongCOVID.

At current *documented* case counts, the U.S. has ~18 million #Longhaulers. The @CDCgov 's own data estimates only 1 in 4 cases are actually documented. (4x as many w/ #LongCOVID).
3/7
Read 8 tweets
🧵 Our guidebook provides information, support and signposting.

📕 Chapters for young people, parents & caregivers & schools.

🔬Evidence based information & case studies

🤗 Nobody has to feel alone.

To learn more ⬇️

longcovidkids.org/support-guide

#LongCovid #LongCovidKids ImageImageImageImage
Long Covid Kids started as a grassroots organisation in September 2020.

In October 2021 we became a registered charity.

Our patron is beloved children’s author @MichaelRosenYes

#LongCovidKids #LongCovid #MichaelRosen #Charity #Support #Children ImageImageImageImage
With the support of experts, scientists, paediatricians, doctors, nurses, researchers, advocates, occupational therapists, physiotherapists teachers & educational psychologists our team of volunteers created a guidebook to raise awareness & educate.

#LongCovidKids #LongCovid ImageImageImageImage
Read 26 tweets
I am angry today. In order for my son & for us as a family to get the supports required re disability supports he needs to live in a group home. 🧵1@fordnation @Disability_WP @SR_Disability @dsontario @CdnDisability #disabilityinclusion #cdnpoli #DisabilityPride #Disability
2. Why is that ok? What if he’d rather live at home and have supports in his home? Even in a group home, they have their own apartments & get 1-1 care. Why can’t people like my son have a choice?
3. What if he doesn’t feel safe in a group home? What if he doesn’t have the ability to even communicate certain things? What if that group home has really hurt him? This is absolute bullshit. Yes, I’m angry & I’m hurt.
Read 6 tweets
Nearly all recent in person academic conferences/workshops I heard off (unsurprisingly) turned into #Covid mass spreader events. Trouble is that offline conferences not only increase ableist segregation, but also in this way contribute to chronic disability 🧵#AcademicTwitter 1/7
Every (re)infection significantly increases the chances of #LongCovid, and other long term #chronicillness. And those who already have #LongCovid or another #disability (many academics!!) can often not even consider participating. 2/7
Remember that vaccinations do not protect sufficiently (by a looong way!!) against #LongCovid. And so anyone can suddenly become severely disabled. Long Covid is not being a bit tired, but for many more akin to living one's death. I kid you not. It is torture. 3/7
Read 10 tweets
I understand the intense feellings on either side of this issue,

but if the news are telling you that Roe v Wade was settled law or that it would stand forever they are lying to you

Roe had a many rather large weaknesses, & its incredible it lasted as long as it did
Roe v Wade was always fragile,

Ginsburg said in a 1992 lecture that “doctrinal limbs too swiftly shaped, as experience teaches, may prove unstable”
townhall.com/columnists/pet… @MrAndyNgo @MrAndyNgo @MattWalshBlog @lizzywol @wil_da_beast630 @Timcast @QTRBlackGarrett @libsoftiktok
isn't a rightwing talking point either,

many lefty outlets & journos pointed this out over the years, its a common belief taught in law school & discussed in congress & legislatures across the country

just not something they like to talk about openly
newsweek.com/ruth-bader-gin…
Read 9 tweets
🔴 We're LIVE! Join @InclusionCA and @InclusionIntl to discuss the expansion of medical assistance in dying/#euthanasia in #Canada.

We'll be live-tweeting the session and sharing key points from the discussion here, follow this thread to catch the conversation!
👇
During the COVID-19 pandemic, #Canada legalized a pathway to euthanasia for people who are not terminally ill, provided they have a disability or disabling medical condition.
In practice, people with disabilities are dying because they live in poverty, can’t secure affordable adequate housing, and are avoiding #institutionalization.
Read 36 tweets
We should not only make research more accessible because it is the right thing to do, but because it provides more accurate results.

Listen to the full podcast on our website: bit.ly/3mdbcda

#AcademicChatter #DisabledInSTEM #DisabledinHigherEd @FractalEcho
Video description: Purple background with a picture of Dr. Rua Williams: a person with light skin, brown hair to their shoulders, and wears circular glasses. They wear a white floral collared shirt, floral bowtie, and blazer/jacket. White text that reads:
Dr. Rua Williams discusses how accessible data collection methods provide better research results that are more comprehensive and valid.
Read 9 tweets
#CoSP15 is coming up!

Get to know #InclusiveFutures partners and how we're working towards a #disability-inclusive future at the following side events next week ⬇️
Wednesday 15 June ➡️ Beyond placing persons with disabilities in jobs: The case for CRPD based inclusive employment.

Register here: us06web.zoom.us/meeting/regist… #CoSP15 #CRPD #InclusiveFutures @IDA_CRPD_Forum Graphic with the times you can join the COSP15 side event, w
Thursday 16 June ➡️ Beyond the rhetoric: Realizing meaningful participation of persons with disabilities through inclusive programming.

Register here: us06web.zoom.us/meeting/regist… #CoSP15 #CRPD #InclusiveFutures @IDA_CRPD_Forum Graphic with the times you can join the COSP15 side event, w
Read 4 tweets
🧵 The @DEAHQ @CDCInjury @HHSGov @CMSGov interference in the practice of medicine is having devastating consequences for people who have #RareDisease Complex #chronicillness or a #Disability that requires a controlled substance to maintain their health
Fear, not Patient well being is determining prescribing practices.

Patients like my daughter are caught in the riptide of Medical Professionals attempting to avoid unwarranted persecution by Law Enforcement.

Unable to discontinue the only Seizure RX
that has stabilized her condition & not caused severe life threatening adverse reactions.

Since the @CDCgov Guidelines were issued by @CDCInjury in 2016, my daughter's life has been put in jeopardy repeatedly. She is a rare disease patient with multiple overlapping chronic
Read 12 tweets
I don’t know why so many people working in wealth management keep requesting to connect and speak with me.
If you work in wealth management, I think you should know:

👉🏽 Nearly half of everyone in the UK that lives in poverty is disabled or lives with a disabled family member.
👉🏽 More than 600,000 disabled people in the UK are estimated to have £10 or less per week to pay for food and other costs.
👉🏽 Disabled people have to pay more to try and live the same lives as non-disabled people, but we have less or no choice due to inaccessibility, ableism and stigmas against us.
Read 18 tweets
Solved - Gulf War syndrome mystery: U.S. Gov-funded scientists blame SARIN released into air — #veterans #military #GulfWar #healthcare #science #ToxicExposures dailymail.co.uk/health/article…
Researchers believe #troops’ exposure to sarin gas is to blame for the mysterious unexplained collection of illnesses known as Gulf War syndrome. About 250,000 #veterans have complained of chronic symptoms like fever, fatigue, #memory problems, body pain, etc… #GulfWar #research
According to the #CDC, sarin gas is one of the most deadly chemical agents. — #veterans #military #GulfWar #ToxicExposures
Read 9 tweets
#Thread Good morning you lovey lot! I see that a government minister (not sure which) has come out with the tried and tested bollocks of 'work more hours or get a better job'. Two things: more hours won't help people on UC because any extra money is just 1
taken off their benefit, so they are effectively working longer just to save the government money rather than actually improving their own financial situation. Also, the idea that people can just wave a magic wand to get a better paid job is a complete logical fallacy.2
Even if it weren't, who does that leave to do all the low paid (not low skilled) jobs that the hypothetical people who moved onto better paid jobs aren't doing any more? Seriously the fact that they are recycling this tired old trope shows that the posh version of the Mafia 3
Read 8 tweets

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