Discover and read the best of Twitter Threads about #Disabled

Most recents (24)

Let’s talk bodies, self, and the ethical use of biotechnology. A thread on what a human is, the differences between individuals, and autonomy as the bedrock principle of the biotechnological age. 1/x
Here’s the previous discussion on science, legitimacy, and social capital if you missed it
I’m a molecular biologist. I work with the bits and pieces of biology that are shared by every single living thing on this planet - DNA, RNA, and protein. 3/x
Read 40 tweets
Excited to have several entries in The Katherine Schneider Journalism Award for Excellence in Reporting on Disability from 3 different publications.
Attention to #disabled journalists writing #disability stories is paramount when the CDC says 1 in 4 Americans has a disability.
Most often it is non-disabled people writing the stories of #disability and #disabled people, which means everything is seen through the lens not of disabled people but of non-disabled people viewing disability. Quite a different POV.
Just the way non-disabled people have reported on the primary and the candidates provides an entrée into what I mean: How many of the candidates are addressing THE largest minority in the country? Z E R O.
And one candidate, Marianne Williamson, has a complicated history on this.
Read 8 tweets
I spent weeks interviewing #LGBTQ people for my three-part series on #disability.
At #ADA29 it's critical to remember #disabled Americans are THE largest minority group, yet most invisible.

LGBTQ disability and Pride: The case for inclusion…
The 2nd installment of my series on #LGBTQ #disability addresses the impact of being queer and #disabled. Exclusion from our own communities is common for disabled people--and a layer of macro-aggression disabled people fight daily.
The 3rd installment of my series on #LGBTQ #disability deals with access, employment & discrimination. The unemployment rate for #disabled Americans is double that of non-disabled and can be even higher for people with LGBTQ identities.
Read 6 tweets
The Dude is probably going to die very soon.

The #MemoryCare and our hospice service are managing his discomfort.

We told him that he doesn't have to worry about anything, that he can just rest as much as he needs to.

#Disability #SpoonieChat #Alz

Waiting for someone to die is a strange thing, like a trip into a parallel universe, outside of time.

Without Penny our house is quiet.

And this moment is extra silent, like when you wake up to a thick blanket of snow in the middle of the night.
#Disability #SpoonieChat #Alz
I think it's the quiet that wakes me up on those snowy nights. Or is it the brightness of street lights and the moonlight bouncing up off the snow?

But that spell is always broken by shovels scraping, blowers growling, or car doors slamming.
#Disability #SpoonieChat #Alz
Read 66 tweets
Autistic people "go hard" when they do something. Finding the autistic community and making the cognitive and emotional paradigm shift from "I am always wrong and need to show deference" (how we grow up) to "I am valuable and have been abused by systems and industries" (cont)
is a brutal rearranging of our whole psyche and sense of self. We make the decisive covenant with ourselves that we aren't going to be abused anymore and we will do anything possible to keep others from having the same experiences. It is a radical shift and a brave one (cont)
Sometimes, we over-correct. The lines are so obscure and hard to read between what is toxic abuse and what is ableism. We oscillate between realities: the reality that our voices are needed to help future autistic generations not suffer the way we did, but also (cont)
Read 19 tweets
Thread: #Ableism
It is 'how-to-dress-for-academic-job-talks' season & many have pointed out the race/class/gender dimensions of these standards, but it's worth remembering that these standards need to be examined through the lens of disability, which is a part of 'diversity'...1/
...and if we claim are seriously interested in inclusivity/diversity in academia, we need to think about disability in how we design interviews & assess candidates.
Think about the recommended formal suits.
Uncomfortable, expensive & difficult to pull together on a budget. 2/
But, also, clipping an insulin pump or other medical equipment inside a suit can be a little difficult for some. If a suit appears ill-fitting, maybe we should check/assess our initial judgements. Additionally, many #disabled people also have sensory issues with some fabrics. 3/
Read 11 tweets
Pretty furioius to see @Sephora re-cut their "We belong to something beautiful" ad to excise @aaronphilipxo, a black trans #disabled model who was in the original ad in the opening sequence.
Just saw the recut @maddow on @MSNBC.

This is the fab Philip.

Here's the original, with @aaronphilipxo in the opening. So you can see what was cut. And ask @Sephora why.

.@aaronphilipxo was just featured on the cover of @papermagazine.
June 2019 by Myles Loftin, and interviewed by Naomi Campbell.
Read 4 tweets
THREAD. Please RT🙏🏼
1. Public breakdown. It’s my mom’s 76th b-day Thurs. She’s my sole caregiver from a bad car accident resulting in a #TBI. R Home #Foreclosed from my #medical bills/crappy #insurance. All I wanted 2 tell her is I found #investors to charitably save our home.⤵️
2. I know accidents are called that for a reason but my mom’s my best friend & everyday/hour she’s helping care for me. After all she has done & years she’s lost taking care of me, she doesn’t deserve to lose her/our forever home in the last 1/4 of her life w/a #disabled daughter
3. How can I recover and find an #angelInvestor that can save such a wonderful mother/daughter duo? We’re in our home paying rent as ordered by the court until an appeal is over & we’ll be out w/nowhere to go, live, survive. No family. We only have each other & our 3 ‘lil pups.
Read 17 tweets
I have been trying to get answers from top tier candidates for several months on their stance on #disability. #HillaryClinton had broad policy & #disabled people on her team in 2016. ONE in FOUR Americans has a disability. We are THE largest minority in America.
For those who need a template for a candidate on #disability, here was #HillaryClinton in 2016. We should expand on that, not move backwards.…
And there is #HillaryClinton's archived policy, which included #autism, #Alzheimers, #disabilityrights, #mentalhealth, universal healthcare for all, #HIV/#AIDS, paid medical leave, Social Security and Medicare protections, addictions & substance abuse.
Read 4 tweets
1/ When I got home from an appointment this morning, I was met by a neighbor who didn’t want to identify themselves other than to say they lived in one of the cul de sacs that’s connected to our small dead end street. The neighbor curtly asked if I was the homeowner or a renter.
2/ I let him know I was the homeowner, and he informed me that he has been trying to sell his nearby home for sometime without success, and in his opinion our lack of upkeep on our landscaping was partially to blame.
3/( I admit, we had a lot of tall crabgrass in the plants along our front porch, and the bushes along the street are in desperate need of trimming. We also need to get our dandelion situation under control. )
Read 17 tweets

If you're a man home alone on a Saturday night & your first urge is not to read a book or watch a movie, but to troll women on Twitter and harass them, you need therapy. You have problems with women and that's a sickness that could harm women. Please seek help.
I have written hundreds of articles over the years on male violence and it always starts with men demeaning women, abusing them verbally and attempting to intimidate them. The escalation to violence is swift.
I did this investigation a few months ago:
Men terrorizing women because they are often bigger, stronger, more (statistically) prone to violence is the most common of felonies. It's vital that men who are NOT violent check their men friends who exhibit those signs. You could stop a tragedy.…
Read 7 tweets
Time to take some ownership of #disability organisations to ensure they do have disabled people at the top.

Here's a few thoughts:
1. ask your service provider if they have #disabled people on their board.
If they do have #disabled people on the board, do we make up half of the board?

If not, why not?

#disability #leadership
Are there #disabled people on the executive / management team?

If not why not?

#disability #leadership
Read 12 tweets
I am one of 17M Americans with #cancer right now.
Some of us will survive, some will not.
Our survival should not be predicated on our health insurance.
#M4A is an imperative step toward universal coverage and keeping us all living as long as possible.
Every candidate must support #UniversalHealthCoverage. Access to care is the single most important issue for all Americans regardless of party. EVERYONE has a family member who's sick: parent, spouse, child. No one should face bankruptcy to care for a loved one.
My father's final illness bankrupted me. I got sick soon after. This is a common story. But unlike our peers in Canada, UK, France or Germany, we have no recourse but to accrue massive hospital bills and risk losing everything to care for a sick loved me.
#M4A is a promise.
Read 8 tweets
So I know we all have that *other* reason to be upset w/ CT right now, but for the love of all that is holy #disabled ppl have asked y’all to not only STOP using “differently abled” but also to stop centering the voices of abled parents of disabled kids who claim to speak for us
This article is actually a really good example of exactly how the abled parent perspective gets so much wrong about #disability and its intersections with theology.
This article has some good things, and it *sounds* super supportive of #disabled people, but really look at what is being said here:

Disabled people are important to the church because they teach us about our brokenness and need and lack.
Read 16 tweets
For the past week I have been incredibly unwell from this illness yet having to work because we don't have an NHS in this country and I just want to slap people who think #M4A is too much because Biden said so.
Just saying.
You can't imagine how awful it is to not have options. You can't turn down work no matter how sick you are because you need every ridiculous amount of money people will pay you because your health insurance premiums and medications cost a freaking fortune.
There are things we need from the next Democratic president, whenever we get that person. And this attitude that it doesn't matter is just false. It matters if you are poor or sick, a woman or POC, #LGBTQ or #disabled. Policy matters. Platforms matter. I can't write this enough.
Read 3 tweets
The biggest focus area for #autismawareness should be awareness of the principles embodied in the #CRPD.

Do #nothingaboutuswithoutus.

While you exclude both speaking and non-speaking autists from your decisions, you commit human rights abuses whether you realise it or not.
If people in the autism industry stopped violating the #CRPD, we would see:

- the end of harmful practices and substances masquerading as therapy and (ABA, Le Packing, MMS etc.)

- autistic people driving the priorities of autism research

- nonspeakers' access to communication
We have to stop excluding nonspeakers' inputs from these conversations.

Making them the excuse for not listening to autistic people who speak, while you pay ZERO attention to THEIR actual words means you respect neither group.
Read 9 tweets
76 yr old Mom needs help…
Please take a moment & read our story. 💔
I just found out that I will be getting $514/mo for SSI but that has to go towards our home & bills/food.
I still need help w/$198/mo RX.
Also received notice that foodstamps will be CUT to $15/MONTH! 😭
Who could possibly eat on 50 cents a day or survive on $17.13/day?
Read 20 tweets
Well, @ashcleigh, as a gender outlaw, I've written extensively about white women & hetetosexual privilege for decades in journalism and books. As a victim of male privilege, which began with being hospitalized at 16 for #conversiontherapy, I am well aware of its impact.
But I as a white woman in a mixed race lesbian family living in a black neighborhood in a majority black city, @aschleigh, I am acutely aware of my white privilege. In white America it's easy to ignore that privilege; in a black neighborhood it's unmistakable.

White women have an obligation to WOC.
Straight women have an obligation to #lesbians, bi and trans women.
Non-disabled women have an obligation to #disabled women.
Women of means have an obligation to poor women.
We all have obligations to marginalized and vulnerable women.
Read 3 tweets
While we're talking about the cost of drugs, can I just note that MS drugs cost between $60k to $110k per year?

MS is incurable, progressive, disabling.

The cost of these meds doubled and tripled. Insurers more expensive than paying for relapses and hospitalizations.
#BigPharma would rather harm people than lower prices.
It's a punishing, brutalitarian way for those of us who are sick and #disabled to have to live.
We talk about insulin and Epi pens, but there's so much more.
The CDC says there are 131M chronically ill Americans. All of them on medications.

Trump promised to address this, but hasn't.
Congress promised to address this, but hasn't.

Americans are suffering and need help.

Don't promise if you won't help. Sick people deserve better.
Read 3 tweets
Well - it's my birthday today. It's also 3 weeks since we provided @RedbridgeLive with a clear list of emergency needs as disanled, homeless people, that they need to help us meet as per the Care Act. NONE have been met.
@RedbridgeLive So - NO access to disabled bathing facilities suitable to our impairments, for months now. No hairwashing/drying. No support in accessing food, made increasingly impossible by disability, but also complete lack of cooking and refrigeration facilities.
@RedbridgeLive The distance to the car is too much for me, and for Stevie. She last "went out" on 16 January when she was forced, with Sean, to transfer to another Travelodge while I was in hospital. She hasnt seen anyone except me and her brother since.
Read 61 tweets
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?

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.
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.


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

Read 45 tweets

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