The US Census is planning to change their questions about disability (and definition of disability), which would decrease their estimate of disabled people from 14% (already low) to just 8%.
J'arrive pas encore bien à formuler le truc, mais je suis convaincue que, de la même façon qu'il faut rire "up" (si tu te moques des puissants tu es drôle, si tu te moques des opprimés t'es juste un connard), il faut militer "down", pas pour soi (pas uniquement), mais aussi et surtout pour ceux qui sont "en-dessous" : ceux qu'on n’entend pas parce que leur état de santé est très dégradé, parce qu'ils n'ont pas accès aux médias pour des raisons de validisme, de racisme etc.
People keep shouting that if disabled people can’t cook or clean they should be institutionalized. Apparently accommodating us so we can live independent lives is angering others. Setting aside how awful many care homes are - do you realize there aren’t nearly enough beds?
I get that many ppl seem to want to completely disappear us from society. Seem to think we would be “better off” institutionalized even though many homes are dangerous places for disabled ppl. Even IF they were all sunshine & lollipops …do you think there’s enough of them?
Do you think they accept people of all disabilities? This idea that we should all have families or full time caregivers to support us is nonsense. It’s unrealistic and in many cases unnecessary. Many of us can & do learn to adapt on our own with part time help where available
The reality is we don’t have enough long term care beds to support everyone who’s chronically ill. Many places won’t take you until you’re a certain age. Many deny if you’re too unstable or don’t have rehabilitation goals. I know. I tried to find one & was repeatedly denied.
Stop assuming there’s some society wide program that places disabled people in homes that suit their unique circumstances. Many congregate settings are vectors for disease and neglect. We have to beg for access to places that often make us worse & reduce our quality of life
When you’re tempted to shout that we belong in a home - consider if it’s where YOU would want to be. Also look around - many countries are rapidly expanding their euthanasia programs to include disabled people with non terminal illnesses. Why do you think that is?
We are seeing rising disability numbers due to Covid - and the sad fact is we didn’t have enough supports for disabled people before the pandemic. We certainly can’t support the influx that’s currently occurring. So we are offering DEATH instead. Dead people cost less money.
I know folks are stuck in denial. They don’t want to accept the society wide risk associated with unmitigated COVID spread. But we are begging you to try. Try and think critically about WHY governments are expanding euthanasia programs.
Believe us when we tell you the dire lack of support available. We aren’t shouting about this because we want sympathy or enjoy complaining - we’re shouting because we can see the writing on the wall. We know our systems can’t support this much disability & people will suffer 1/2
I see people on my timeline now and then grumpy that people are trying to encourage others to use alt-text, sometimes saying people are "too pushy" or they "deserve to be able to post in peace."
So folks actively work together for once to advocate for accessibility for disabled people and your primary complaint is that it's annoying so stop? I hope folks wake up and realize how fucked up that is.
ESPECIALLY when tons of people refuse to wear masks leaving us stuck in our homes where social media is a godsend for having community.
I'd have loved to see these folks' reactions when people in wheelchairs were using sledge hammers to put in curb cuts back in the day. Maybe we gotta bring that kind of energy back. #Disablity#DisabilityJustice
#introduction We are currently a small group of chronically ill/disabled/ people and their carers, aiming to create a supportive space for each other in this isolating pandemic. We are antiableist and antifascist.
On this account we will share our groups projects and invite people to participate in them with us.
We gladly welcome emails from people who might be interested in joining our group. #CovidIsNotOver#DisabilityJustice
On Tuesday, September 12, the SSI Savings Penalty Elimination Act was introduced by Senators Sherrod Brown (D-OH) and Bill Cassidy (R-LA) and Representatives Brian Higgins (D-NY) and Brian Fitzpatrick (R-PA).
This bill makes long-overdue reforms to the SSI program that would empower millions of people with disabilities to earn and save more money for their futures.
"we must know history & be able to apply it to the current moment. queer liberation, disability justice, racial justice – these struggles cannot be separated."
The Transgender Law Center is seeking deaf, Deaf, and all kinds of trans and disabled respondents for their upcoming survey of disabled trans folks. They're legit as far as I know; I do their surveys any time I'm the target audience.
"The Disability Project breaks isolation, grows connection, builds leadership and infrastructure for trans and queer disability, Deaf, ill and Mad communities, while increasing Disability Justice capacity in the movements that seek to serve them."
Ricardo Levins Morales poster catalog, p700: "Nothing About Us, Without Us, Is For Us"
This powerful slogan arose from the struggle of people with disabilities in #SouthAfrica. It could be the basic operating principle of peoples’ struggles all over the world. One of our most popular images, it's a poster, card, button and shirt: https://www.rlmartstudio.com/product/nothing-about-us-2
Today (9/5/23) is the last day of our Labor Day sale - 25% off with code EDUCATE
Took some time this afternoon to organize my Covid-19 articles document, read the articles cued up in my tabs, & send an article on the intersection of disability justice & Covid-19 policy/attitudes to the folks who ask me if I will be masking forever.
I want a future where we protect everyone's health & safety. If that's something that you want, match your politics with real actions & mask up. You do you is eugenics.
Awhile back I went to a specialist for unexplained & painful lower leg swelling. His diagnosis?
“Maybe your legs are just getting fat.”
Horrified…I asked how many people gain weight ONLY in their calves. He shrugged me off. A 🧵 on knowing your body & advocating for care
This doctor did NO tests before deciding it was weight gain. Wouldn’t discuss it with me further & wouldn’t permit me a second opinion. I went home completely dejected and also worried because I KNEW something was wrong.
For the next few days I elevated my legs as much as possible and tried to gently massage them to see if it helped. They just kept getting bigger. Eventually they started weeping (fluid was seeping out of my skin) and my ankles were dislocating from the pressure.
So I went to the ER. I was actually nervous about going because I could only imagine what that doctor had put in my chart. Thankfully I had a doctor who took the swelling very seriously and ordered a wide range of tests (and immediately put me on bed rest to protect my ankles)
Turns out it was a combination of third spacing from my MCAS (when the fluid doesn’t stay in the vascular system & leaks out into the tissues - can be a big issue if you have POTS as well) and low albumin. Dangerously low albumin.
Needless to say I was suffering from malnutrition due to my extensive GI issues and that was causing the swelling. It most definitely wasn’t weight gain. I was underweight with the exception of my legs.
I never knew that low albumin could cause painful swelling like that - nor did I even think that I was suffering from malnutrition. But with both POTS & MCAS it makes sense.
Our digestive systems are controlled by the autonomic nervous system (the system malfunctioning when you have POTS) so it’s not uncommon to experience vomiting, diarrhea & other gastric complaints.
MCAS only compounds the issue by limiting the foods you can tolerate and also causing vomiting and diarrhea. The two conditions make getting adequate nutrition a challenge - especially if you’re on the severe end of the spectrum
I’m very grateful to the doctor who figured it out and helped me get homecare so I could get proper nutrition & stay off my feet while the swelling was at its worst. But it took a LOT of courage to go to the ER after being so rudely dismissed.
This is a lesson in the importance of knowing your own body & having an advocate with you whenever possible. I KNEW something serious was wrong but I had no one with me to challenge the first dismissive doctor. And he was completely unwilling to listen to me.
Don’t ever feel like you can’t get a second opinion or go to a different hospital if you feel you aren’t being taken seriously. And don’t ever apologize for advocating for your health. If you don’t have someone who can go with you - try & phone or video a friend.
Lastly can we please start listening more to patients? We know our bodies best and when you dismiss us it causes not only physical damage - but emotional damage too. You make it harder for us to seek care in the future.
Patients shouldn’t be dismissed without any tests being run. Had I not gone to the ER I could have ended up with life threatening cardiac issues from the electrolyte & fluid imbalance. A simple lab test would have confirmed the diagnosis had the first doctor cared to do them.
This experience was also an excellent reminder of the far reaching effects of dysautonomia & MCAS. It’s important to be as educated as possible in these conditions & the strange downstream complications they can cause.
And remember dismissal & gaslighting is often far worse for marginalized individuals. There’s a LOT of bias in medicine. If you’re someone in a position of privilege please call it out when you see it - and offer to be an ally to those who need support. Allies save lives
Can we build better mutual aid networks on the Fediverse?
We need to build better communities of care. @Tinu has been building an amazing network on Twitter for years, but now that's being shredded by the growing abuse and fascist queerphobic racists. But the network still sort of exists there, and it's why some people end up stuck over there, because the network here is scattered and unreliable.
If we want to build a more just, accessible, equal, and equitable future, then we MUST build up a supportive mutual aid community. One of care, where we leave no one behind.
Disabled folks rely on mutual aid and a network of support.
When people mock or demand people not "beg" for money or mutual aid, when you report our posts? That's all harmful and ableist. If people don't want to see our mutual aid posts, then use the tools within the fediverse softwares to create filters to block that content. Otherwise, leave us alone to build up or help us build up.
Disability payments often aren't enough to survive on even if we are able to get on it. (Some get trapped in endless reapplying for years despite having qualifying disabilities because the system is set up to deny, not aid us.)
So we rely on mutual aid to help keep us alive.
So either help us set this up or shut up and get out of our way please.
Please read and share this letter with your comrades alongside with groups, events and spaces you are part of. Many people and groups involved in radical organising have sadly surrendered to the capitalist, eugenics and ableist narrative - and thus practices - that pretends there isn't an ongoing pandemic, thus ignoring how Covid is still killing people alongside being a mass disabling event. This letter hopes to help change this and amplify voices and experiences that have sadly been marginalised and ignored, whilst giving practical advice regarding Covid safety for organising, spaces and events.
"We need to try and create the kind of events, spaces and groups that can serve as models for a future, better, world. This is what prefigurative praxis looks like. It is the work we need to do."
This can manifest in various ways, from organizers dismissing requests to mask at protests or meetings to large-scale divestment and state retrenchment, as seen in the so-called Medicaid unwinding. Which is why a revolutionary stance must reject this framework and recognize the economic system as a transitory social order for resource allocation and distribution, intentionally stacked against the most vulnerable. It is not a reflection of some inherent "law of nature" that we should also be upholding in our movements.
Currently, we are engaged in a struggle that disabled people are familiar with — refuting the social meaning and power that words and ideas have in tagging and labeling individuals as worth more or less, as burdens, or as disposable. Part of this project involves asserting new meanings and challenging the way these labels exist as de facto negatives. This requires asserting positive frames and conducting political education around community care.So towards that, can you talk about what community care is, for listeners who may not be familiar, and how the push to “get back to normal" is basically the antithesis of community care?
Alice Wong :
Community care is giving a shit for others. [...] We can band together and offer what we have for a larger goal that will benefit others without any personal ulterior motive."
Autistic Women & Nonbinary Network, who write and translate digital organizing tools to increase accessibility for autistic and disabled people who do not speak English and/or have intellectual or cognitive disabilities: https://awnnetwork.org#DisabilityJustice#DifxTech
If you are part of a non-profit in the U.S., disabled-led, and do TECH STUFF in some way that is also DISABILITY JUSTICE STUFF, please talk with me and have a look at the RFP. #DisabilityJustice#DIFxTech
Important bit in this report: the U.S. Department of Transportation has proposed new standards for how airlines must accommodate passengers with disabilities.
The DOT has asked for comments on that NPRM, identified by the docket number DOT-OST-2022-0144, by May 13, 2024 (see link below).