Discover and read the best of Twitter Threads about #disabled

Most recents (24)

Hello & Happy Spring! (Thread) If you haven’t been on here til 1am EST, I’m going to unpack recently announced #opioid bill S-724 (named for John McCain). For reax check out threads by @erinbiba and @AnaMardoll (call @gillibrandNY ASAP to protest bill.) Onto the breakdown:
Sen. Gillibrand introduced this bill with a flip referral to dental work and a misunderstanding of the term “acute pain”. #AcutePain does not mean ‘severe’ in medical terms, it means pain lasting up to/less than 6mos. If you’ve ever had a gunshot wound,
been in/had a serious accident, needed extensive surgery, had #fibromyalgia #arthritis #endometriosis or #pelvicpain #backpain -just to name a few-you may know that sometimes one needs more than 7 days of pain meds.
Read 17 tweets
Silicon Valley. How did I know.

2ndly the point about philanthropy.
It's super MEGA important. This is why MANY organizations for #disabled people?

DO NOT GIVE A CRAP ABOUT DISABLED PEOPLE.
But. For probably the next ten years? This is also an Achilles's heel.
Read 3 tweets
So in my city #SSI pays $771 a month.
I was just informed that I don't qualify because although I make below the poverty level in annual income, that income makes me ineligible.

The SSI person was very nice as I coughed through our conversation, but it's over.
#CripTheVote
How is anyone supposed to live on this amount of money in a big city? It's beyond belief. Who sets these income levels? Where are #disabled people supposed to live? How are they supposed pay for a phone? Even a burner costs $25 a month. What about utilities?
The insanity is, I just qualified for #SNAP because I live below the poverty level, but that "entitlement" as the #SSI person explained, counts against your income limit. The woman was very nice & commiserative, but she closed out my file. My application for #Medicaid is pending.
Read 6 tweets
Here's my latest update to my collection of active Twitter #Disability & #ChronicIllness Hashtags - previous update 12.13.18.

Please share it. Thank you! :-) Light blue sand background has the # drawn in the sand to the right. The left side is blank. <br />
<br />
At the bottom of the picture, text reads
Portable PDF version will appear on my Kofi in the next day or so.

Link: ko-fi.com/TinuWrites
HASHTAGS FOR PERSONAL NARRATIVES

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

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 45 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
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
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
Decided on my project for #BlackHistoryMonth 2019. Reads: Black History Month in large block letters with a colored inside and a hollow outside. Black is red inside, Hustory is green inside. Both words are in the foreground. Month is in the background. The graphic is transparent.
Once a week I'll write briefly about up to 7 historical/famous figures in the Diaspora who

- had/have #ChronicIllness
- spoke of the possibility of being in #DiagnosticLimbo
- or were considered #Disabled.
Why once a week and not every day?

I'm a #Spoonie dammit. I have no clue what day or time I'll have energy.

But I can commit to weekly.

The whole thing is for you to see that we're everywhere. For you to SEE us.

So let's get it.
Read 15 tweets
This image of a visually impaired woman using her phone has hundreds of comments mocking her.
1. Not all blind people are totally blind.
2. Remember Siri & Alexa? YOUR PHONE CAN TALK TO YOU.

Every day visually impaired people experience abuse for using their phones. End it now Screen shot of Facebook. A woman is looking at her mobile on the street. She holds an American style white cane with a red segment at the end. There are over 3000 laughing face reactions.
If you are a visually impaired person who has received abuse for using your phone in public please share this tweet so people can understand the scale of this issue.

Blind people can use phones using the same technology that makes Siri work. It’s not difficult to understand!
If you want to learn how visually impaired people can use a phone check out this blog post which explains it.

Make it your fact of the week that you share with people so I don’t have to experience abuse for sending a text when I’m holding my white cane.
caneadventures.blog/2018/09/25/iph…
Read 6 tweets
Reminder lovely folks that as well as always being available for tarot anytime as I'm saving for medical expenses

I'll be here from 9pm GMT continuing with part 11 of my crystals of Steven universe series
Just over 40 mins till we continue onto part 11 of our crystals of Steven universe series

Part 10 below

Good evening folks it's Wednesday 23 January 9pm GMT and that means it's part 11 of the crystals of Steven universe series ( link to part 10 above)

Id like to take a moment to remind you that I'm live for #tarot & have a variety of decks to chose from

Read 42 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
1. The Boy Scouts recently expanded to include transgender & gay scouts & girls.

It's time they start accomodating #disabled scouts like me.

I really need to see some support of my friends in the disability community - I could use some positive energy for tonight!
2. Tonight my parents & I are going to sit down & talk to my Boy Scout leader.
I am thinking about leaving the troop because they keep choosing events that aren't accessible to me.

I've been a Scout since I was 7. This is the first time I have felt excluded.
3. The Boy Scouts is a private org, so they don't have to comply with the ADA.

But why can't they comply anyway, just because it is the right thing to do?

I'm 1 of 6 in the troop. I just want to be able to participate & do more than just sit in a meeting every week.
Read 3 tweets
Damn do I have some things to say about what passes for #SpecialEd in the communities called out with #ExposeChristianHomeschooling. See, I just figured out I'm #ActuallyAutistic. My twin siblings were diagnosed at age 2.

...no one told them until they were 20 years old.
It was the late 90's. Neighbors were distrustful of us homeschoolers, and church ppl could sense something was off. So the last thing my parents were going to broadcast was that the twins were deeply disabled, and they were refusing to accept help offered by the public schools.
My #autistic siblings got a couple forms of therapy until age 4, and then we "did therapy at home". What we really did was escape the scrutiny of medical mandatory reporters who were already telling us the twins needed in-home therapy options from, again, the public schools.
Read 17 tweets
Read this brief thread & the conversation that follows. How does the #bodypositivity movement perpetuate #ableism & exclude #disabled people? Whose bodies & abilities do we value & whose do we still deem not suitable for public life?
Also, if you’re not familiar with it, I highly recommend reading @miamingus’s “Moving Toward the Ugly: A Politic Beyond Desirability”

leavingevidence.wordpress.com/2011/08/22/mov…
Unrelated: My phone autocorrected “Beyond” to “Beyonce” twice so that tells you a little bit about me...
Read 3 tweets
Today was an awful day.
I am so tired of being #disabled, sick and poor.
It's freaking exhausting.
And everything is worse under this administration.
Before I was paralyzed, when I was upset I would stand in a hot shower and cry.
I miss that.
I miss my other life.
Sigh.
Lack of control is hard.
Pain is hard.
Isolation is hard.
No clear distinction between work & play--you're always in the same place.
There are so many Americans in this same situation--chronically ill with #cancer or something that limits their lives in ways they never expected.
I think about that a lot--how many people are struggling.
Read 3 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
A federal judge ruled the #AffordableCareAct--also known as #ACA & #Obamacare--unconstitutional because #GOPTaxBill removed the mandate.
I've written about ACA since it was devised in 2009 & signed in 2010. Here is a thread📌on what the law does & how it impacts you:
1/
Many Americans are confused about what the #ACA is--and this includes Trump and his #HHS Sect #AlexAzar. A vast array of complex #healthcare statutes are covered under the #AffordableCareAct (also known as #ACA & #Obamacare). So here's a primer to inform you on all points.
2/
The #AffordableCareAct is the comprehensive health care reform law enacted in March 2010 (sometimes known as #ACA or #Obamacare). The #ACA is NOT insurance. It is a LAW that stipulates, in part, what insurance companies provide in their #healthcare plans.
3/
Read 29 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
This day has been so hard.
It's been a year since my last surgery.
I lost correct count of how many surgeries I have had, but it's close to two dozen over my life time.
So many scars on my body and psyche.
I am legit terrified of this next surgery.
I'm so shaky tonight, folks. 😷
People with #cancer are supposed to be brave and model courage for others, but the fact is, it's just the loneliest and scariest of journeys.
I have watched people I admired chart their slow deaths on here.
Quite simply, I don't want to be one of them.
Brave, yes.
Dying, no.😷
Watching #TonyBennett (yes, I am so freaked out I am watching a country #Christmas special, although it's had a lot of jazz for a country special & not much country) belt out tunes with Diana Krall at 92, I want that--decades more time. I want years more of my voice out there.
Read 6 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
Somebody hire me to write about what it's like to actually live in poverty.

I can write about it from myriad vantage points:

▪As a late middle-aged woman (women 50+ are the poorest segment of US population)
▪As a #lesbian(employment discrimination is huge among lesbians)
1/
▪As a chronically ill person (131M Americans have chronic illnesses from #cancer to #asthma that interfere with employment)
▪As a #disabled person (#disabled are the largest minority group in the US, but are most un- and under-employed)
2/
Every time I pitch poverty as a topic, I get an eye-roll.

Poverty was barely mentioned in 2016 Hillary raised it a few times; Sanders talked about "the ghetto" and Trump said he would cut taxes, but he actually cut entitlements.

Yet 1 in 7 Americans lives in #poverty.
3/
Read 11 tweets

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