Discover and read the best of Twitter Threads about #disability

Most recents (24)

In honor of this week’s #disability and #accessibility lecture series, here are few things I wished I knew ahead of beginning work on campus accessibility. #highered
1) When your college/ university talks about #ADA are they talking about more than just facilities? (Facilities are huge but they aren't everything)
2) Incorporate disabled people’s experiences. Incorporate student perspectives. Incorporate staff perspectives. Incorporate faculty perspectives. Get a lot of different voices into the room and try to listen to each other. #AccessIsLove
Read 8 tweets
I put this thread up Friday. Few RTs because #disability ♿ and #poverty are boring to people who aren't living it.

That's a real problem in America.

Yet my mentions were full of people facing the same struggle --the fear, frustration and isolation.

♿↘️
The failure to prioritize sick & #disabled people in America is an actual catastrophe for millions. We already know nearly all of America's #homeless suffer from some #disability.

Also, 81M disabled & 131M chronically ill Americans struggle financially due to medical costs.
When the #GOPTaxScam eviscerated the #ACA mandate, it jacked up the premiums for every sick person in America. Mine went from $239 a month for my HMO to $1,978.10.

The CBO said it would happen and it did. Millions have dropped their health insurance because of these price hikes.
Read 6 tweets
I would like one freaking day without having to fight not only to stay alive, but to access the medical services that should be available to me for the $1,978.10 MONTHLY premium I pay to Blue Cross for my HMO as a person with #cancer

But instead it is an exhausting daily battle.
Trying to sign up for #disability because I am destitute from the cost of #healthcare for sick people in America is the most daunting & frustrating process. I have been working since I was 14, including a 4yr stint helping this country in the domestic Peace Corps and I'm angry.
Congress has failed 131M chronically ill Americans by refusing to give us a system where we all have the same access to care. I am trapped in my house because I can't get a wheelchair lift for my porch and a motorized wheelchair.
Read 7 tweets
.@SocialSecurity I have been on hold with you for 47mins thus far. I don't dare hang up, as I have to get the status of my application for #disability to move forward with local applications related to this.
It's disrespectful and unprofessional to not have a call-back option.
.@SocialSecurity It is now 1hr & 13mins I have been on hold, repeatedly told on loop that you are serving "51 million other people." If that is indeed the case, then hire enough people to serve those millions of people because there are 81M #disabled Americans like myself, alone.
.@SocialSecurity TWO HOURS AND SEVEN MINUTES.
The disrespect to #disabled, chronically ill and older Americans with this system is incalculable.
There are 81M disabled people and 131M chronically ill people in the US according to @CDCgov.
Hire more workers to help us. Please.
Read 4 tweets
Let me tell you what you need to do about a disability Royal Commission, @ScottMorrisonMP. And listen up, because we are 20% of the population (even before carers are counted). We vote.

You need to get this right. Here's how to do it. #RoyalCommissionNow #auspol @Jordonsteele Royal Commission now into disability violence<br />
<br />
New line - into institutions boarding houses hospitals schools family homes - all the places where we are abused
2/ You need to focus on ALL the disabled people in ALL the places they are abused. I understand that you'll be worried about cost and that you think you should narrow the TOR. Many of us are voiceless - it's why you CAN go as broad as possible and not just 'the sector' or 'care'.
3/ This is why. There are multiple issues that need to be addressed - not just workforce or culture or NDIS or one single dimension. There are issues for adults being killed by carers, their family members - people who are victims of hate crime. Hospitals, schools prisons.
Read 51 tweets
This has been the most frustrating day.
I have been working since I was 14.
I am now trying to apply for #disability--#SSDI.
It's a ridiculously arduous process meant to trip people up and keep desperate/sick/#disabled people from accessing help.

We must do better.
#CripTheVote
Since the #GOPTaxScam, my health insurance premium costs $1,978.10 PER MONTH for an HMO.
The cost of being sick in America.

That is just my premium--not the co-pays, not the cost of oxygen, hospital bed, Rxs.

I'm already bankrupt and soon The Wife will be as well.
#CripTheVote
My health insurance premium costs $24k a year.
That's more than I make as a writer.
How is this acceptable, America?
If I didn't have a partner, I would be on the street, paralyzed and sick.
Is this what we want for our most vulnerable people?
#CripTheVote
Read 7 tweets
*Taps lecture mic*
#Thread

#Privilege means you’re given unearned advantages based on a social norm or value. #Race, #gender, #class, #disability, & #sexuality are all major social systems which value certain bodies & behaviors over others.
Fatphobia & slim/size privilege are produced by systems of gender, race & class. How? By the production of beauty norms & medical standards of health which are based on middle class whiteness & directed mostly violently at women.
Thought big booties are recently valued (notably most when they are not on the bodies of black women, especially fat black women), the bodies historically most celebrate were/are thin white women. This is an ideal that harms all women & encourages us to all hate our bodies.
Read 12 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
In 2011 I was bitten by a tick. I have a brain tumor/IIH & such severe intestinal damage that I CANNOT digest food w/out enteral food RX. It's $198/wk, even w/pharma discount. My (now) 77-year-old Mom is my caregiver but she can't afford it. Don't have enough to eat/save 🏡. 😭
I contracted E
Chaffeensis, Rickettsia of unknown etiology, & #LymeDisease. I just had 8th spinal tap to relieve pressure on my brain.
I'd been on antibiotics for 19 yrs.
I caught Coxsackie B4 virus-a cousin of polio. Lost most use of (L) side.
I wasn't treated for 11 mos. #Lyme
Read 17 tweets
Not one person running for president in 2020 has a #disability platform thus far.
#HillaryClinton had one in 2016.
She had #disabled people on her staff.
She'd been addressing disability for decades.
She invited disabled people to speak at the Democratic National Convention.
One in five Americans has a disability, according to the CDC.
We are the country's largest minority.
Why aren't candidates falling all over themselves to reach out to us?
Because we have been rendered invisible.
That much change.
#CripTheVote
Some candidates are pushing #Medicare4All which we need in this country, but not one has addressed the huge gaps for coverage of the #disabled.

I wrote about how many women are impacted by #disability in this investigation for @damemagazine:
damemagazine.com/2018/03/13/it-…
#CripTheVote
Read 3 tweets
We’re less than 2 months away from the 1st birthday of #BodymindsReimagined. Right now the book has a 4.75 rating on @goodreads & 5 stars on @amazon. I would love to see a few more reviews up in the next month. If you’re read it & loved it, please submit a review!
Ugh if *you’ve* read it. This new phone and me are having issues.
Read 3 tweets
Can I instead write an article about how the concept of guilty pleasures in based in classism, racism, & sexism instead? Because “low brow” often means poor/working class, racialized or feminized things? How bout that article?

#AcademicTwitter #Elitism
Further, half the things people are replying about—sci-fi (my own research), reality TV & gaming—are things people do actual real research on already.
I also feel like this article concept is another way of performing that academics can’t embrace pleasure, that work can not be pleasurable. I say fuck that and read @adriennemaree’s new book Pleasure Activism next month when it drops.
Read 6 tweets
I don’t have all the words for it yet, but if you don’t have Leah Lakshmi Piepzna-Samarasinha (@brownstargirl)’s new book Care Work, you need to go buy it right now. Now. Especially if you are disabled or a person of color or a femme or all of the above. It is...exceptional.
It reminds me of the intensely political, personal, fierce, healing writing of 80s WOC feminists like Audre Lorde & Gloria Anzaldúa. This book is intellectually & emotionally powerful. I’m buying copies for friends. I’m so blown away, so moved—truly a game changing collection.
Read 3 tweets
Annoyed thread: A person named Kris Lint, who has left a whopping 327 comments on the SyFy channel’s website, decided to write an extended comment on my interview on #disability & scifi about how he can’t think of one #disabled person who knows who wouldn’t “jump for a cure.”
Kris says disabilities aren’t things people want, just things people are forced to overcome. Kris says no parent wants a disabled child.
Kris then proceeded to say I’m ignorant for thinking tech should aim to create a more #accessible world rather than focus exclusively on cure. If anyone out there knows Kris Lint, leading commenter on the SyFy channel website, please tell them to kindly fuck all of the way off.
Read 5 tweets
I’ve nearly doubled my followers recently so for everyone who’s new to me: Hello! Welcome! I’m a fat black queer femme nondisabled cis woman, an academic & a writer. Here’s what you’ll generally see from me on Twitter:
-Lots of racial, #gender, #sexuality & #disability justice stuff
-Updates on my lecture travel schedule (aka where to see me speak)
-Promotion of my book #BodymindsReimagined (@dukeup 2018) & other things I write
-My daily work #goals during the semester
-Thoughts on #teaching in #highered
-Appreciation for @Beyonce, @JanelleMonae, @rgay, @nicolebyer & other fabulous #blackwomen
-#Clapbacks at randomly selected folks who come for me when I’m in no mood
-Occasional rants or outfit pics
Read 4 tweets
I was paralyzed on Aug 26, 2016.
It changed my life forever.
Fortunately I was able to access a community of #disabled writers, artists, musicians and more on here.
It helped me survive.
I met the fantastic Alice Wong who does @DisVisibility from whom I have learned so much.
1/
I already knew @nicolaz who is a terrific writer friend and disability rights activist. She introduced me to more people.
One night I met @MortuaryReport on here. Then @Keah_Maria. Then @Tinu. And my dear friend @PKhakpour.
And everyone's best activist pal, @morethanmySLE.
2/
I watched @Mattbc do extraordinary work pro bono for people. @Nataliew1020 models every day what it is to love your severely #disabled child with all your heart.
And so many others dealing with chronic illness and #disability and mental illness--all helping others to navigate.
3/
Read 9 tweets
Here's my lastest update Twitter #Disability & #ChronicIllness Hashtags - previous update 10.17.18

Please share it.
I'll have a PDF version of this for download on my Ko-fi by this time tomorrow. Link at the end.
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 29 tweets
Do you know what one of the worst bits about being #disabled is? It's having NO CHOICE about so much stuff.

I rely so much on my husband, my cleaning ladies and a wide variety of delivery services to bring me stuff.

For example - @sainsburys have been really annoying (1)
I ordered one product, @sainsburys mistakenly delivered another. I can't get to store to exchange it. I've tried to get a refund for this FIVE TIMES over the last few days - I was definitely being phoned on Monday, except I wasn't. #SainsburysRant (2)
Now the reason this is upsetting is that I don't have the product I ordered, paid for and wanted.

I can barely walk. I find it close to impossible to go to a small shop: I can't get to a supermarket to buy the things I want. #SainsburysRant (3)
Read 7 tweets
Thread:

.@TrevorNoah of @TheDailyShow on @ComedyCentral has lost his voice and has been using AAC (Augmented and Assisted Communication) via his phone to communicate on and off the show. #Autism #ActuallyAutistic #Autistic #Disability #FilmDis (1/5)
Neurotypical/non-disabled privilege is temporarily losing your voice and using technology to communicate, and people still respecting you and not questioning your ability to still have complex thoughts and emotions and be supported in the workplace just like Trevor Noah. (2/5)
Autistic people and people with other speech disabilities who do not speak using their mouths have nuanced, complex thoughts and feelings just like people who speak with their mouths. (3/5)
Read 5 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
Please read my mom's gofundme & help in any way possible. We are struggling to survive. RTs help. 😭
In 2011 I was bitten by a tick (after being on antibiotics for 19 yrs). My rescue dog was bitten & died the next day. Wasn't treated for 11 mos- I had E. Chaffeensis, Rickettsia, & prob.#Lyme in spinal fluid & brain. Caught Coxsackie B4, cousin of polio & lost most use of L side.
Read 10 tweets
I'm working on a public access activist project here on Oahu. Our curb cuts, sidewalks, and rural bus access are horrendous. Anyone with a #disability local to #Hawaii who would like to get involved? Please RT.
You don't have to be #disabled to help. If you're in #Hawaii and see a broken or no curb cut, a bus stop in a ditch or surrounded by potholes and gravel (makes it impossible for wheelchair users to navigate), take a pic, log the date and location, and send it to me by DM.
I live in a town that is four blocks long, on a public highway. I can't use my wheelchair to get from one end to the other. The bus stops are impossible to navigate without causing damage to myself and my chair. I'm not the only one.
Read 8 tweets
Some of the daft & unsolicited advice I’ve received over the years, from people who know significantly less about my illness & how it affects me than I do, but still, they have the answers!

#MyalgicEncephalomyelitis #MyalgicE #PwME #UnsolicitedAdvice #ChronicIllness #Disability
I should move out of (damp and mouldy) Scotland to a drier country - I’d lose my entire support network. I would no longer be eligible for UK disability benefits, and I won’t be eligible for social security in whichever country I move to. What will I do for money and support?
Take up meditation - I’ve tried, it makes me anxious. I have other methods of relaxation.
Read 25 tweets
Another vital essay from @SDFirewolf of @DisVisibility on the vulnerabilities of #disabled and/or elderly people in natural disasters.

In #CaliforniaWildfires, disabled people may be left behind sf.curbed.com/2018/11/13/180… via @CurbedSF
.@SFdirewolf: "Every time a major disaster occurs, whether it’s far away or in my region, I wait for the stories of older or disabled people left behind during evacuations or encountering major problems accessing services at shelters and during recovery."
sf.curbed.com/2018/11/13/180…
"Even with the best warning notification systems and strategic plans, people with disabilities are disproportionately impacted during natural disasters."--@SFDirewolf

1 in 5 Americans has at least one #disability, according to @CDCgov.
So this matters.
sf.curbed.com/2018/11/13/180…
Read 3 tweets
Arlington Texas voting update on #Accessibility and early voting for #disabled voters.

bulletin.google.com/share/xrMoRhxO…

#CripTheVote
#GOTV
#VoteBlue
The update to this has my voting experience as a #DisabledVoter.

The place was accessible and catered to multiple types of disabilities including invisible disabilities.
Signage explaining the #disability rules. 9 flyers posted outside the door of the pool entrance, giving the rules of voting laws for mobility and other data.
Read 4 tweets
.@Commish_Schmidt In these days of #VoterSuppression, we all need stories of public servants who are fighting it.

When I got another ballot app instead of my ballot, @Commish_Schmidt stepped in, made sure I got my ballot & that it got in before the deadline.

He saved my vote.
@Commish_Schmidt #Disabled voters are most likely to face #VoterSuppression and voter disenfranchisement.

We should not have to fight to vote.

The forms are hard to understand and make voting more difficult. But @Commish_Schmidt showed real concern for what disabled voters face.
#CripTheVote
@Commish_Schmidt Hopefully in the future @Commish_Schmidt and I can talk more about what can be done to make voting more accessible to the 1 in 5 voters with a #disability. This is a demographic that has yet to be addressed, but we are THE largest voting minority in the US.

#CripTheVote
Read 3 tweets

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