Discover and read the best of Twitter Threads about #NothingAboutUsWithoutUs

Most recents (24)

Us: Listen to autistic people.

Them: No, you're adults. Our research is about children.

Us: We were once children, and we care about children.
Them: These children aren't like you. They can't go on the Internet and type.

Us: When we were children we didn't go on the Internet and type either.

Them: OK, but these children don't speak.

Us: We're not speaking now either, we're typing.
Them: These children don't EVER speak, and they hit their head against the wall.

Us: Yep, sounds like some of us.

Them: If you can type, you're too high-functioning to understand.

Us: Listen to yourself.

Read 4 tweets
Why do good people fall for bad autism charities & related efforts like #ColorTheSpectrum? A thread.

Mostly? "Our media conditions its audiences to fear & pity people with disabilities.”…


And it’s not just sensationalistic, clickbait media outlets that impugn the rights and basic humanity of autistic people. Respected, progressive publications and writers can be just as reactionary. 2/
But because we tend to trust “thought leaders” as both intellectually rigorous and socially fair, their ableism often goes unchecked and is far more dangerous than that of their unapologetically prejudiced counterparts.

Read 7 tweets
Welcome to our PGR sex work research conference 2021 with @sexworkreshub #sexworkresearch21
@ryan_paulryan @TeelaSanders and Kathryn McGarry open with introductions #sexworkresearch21

“Sorry we can’t show you all around beautiful Maynooth, but welcome” - Kathryn

Session 1: Angelika Stromayher is chairing and moderating.
Up first is @aoife_kirk “Well I’m still here...” A feminist ethnography on the lived experience of sex workers in relation to the Criminal Law (Sexual Offences) Act, 2017, in the Republic of Ireland. #sexworkresearch21
Read 96 tweets
Please hear me out!
I know I am not the first one who talks about this. But this is important to me. I am not over this.

#SiaMusic I know, I know. You've heard it. It's bad blablabla.
If it was just a bad movie and the whole stereotype thing once again is renewed in peoples
minds that would be annoying yes, but I wouldn't be scared. Jet I am.
If one of my once favourite singers would have made a film that is horribly researched and insulting to autistics I would have been hurt and that's about it. I would wish no one would see it - who can blame
(3) me, honestly. I have to face a tone of stereotypes without someone bringing a whole "Autism Stereotypes, renewed" movie onto streaming platforms. But it's the scenes of restraint that make me feel scared. It's the fact that a person that the movie tells us knows what he's
Read 12 tweets
@MarklundCharity to be clear. You do not speak on behalf of all high support needs kids. My autistic non speaking son’s SIB decreased 100% when we removed him from a “school” just like yours & placed him in a school that doesn’t use prone restraint or seclusion. I HAVE THE DATA
High support needs autistic & ND people don’t need YOU talking over them. They’ve got this. ONLY people who should be testifying about high support needs disabled people are THEM; survivors of restraint and seclusion abuse. #nothingaboutuswithoutus
I asked my nonspeaking aut son permission to post this. The resource room was the seclusion cell w/which they tortured him daily. Tapping index fingers together means HURT in ASL. He may not have your speech skills, but he comes through loud & clear here #nothingaboutuswithoutus
Read 3 tweets
Again. What if we just ask adult ex-smokers how they're doing after they've switched to #SaferNicotine vaping?

LUNG INFECTIONS: 90% have fewer lung infections than when they smoked.
COPD: 93% of smokers with COPD who switch to nicotine vapes say their lung health has improved.
Read 15 tweets
Last week we had the first meeting on #LongCovid in Italy.

We were pleased to receive full support from Italy's Ministry of Health @MinisteroSalute, with a formal letter that used the patient-made term Long Covid.

@LongCovidItalia #LongCovidItalia @MartaEsperti ImageImage
We want to thanks the international #LongCovid community and all the allies (clinicians, researchers etc.) who helped us to reach this milestone @LongCovidSOS
@long_covid @apresj20 @apuakoronaan @LongCovidKids @LongNetherlands @LongCovidWales

#LongCovid #NothingAboutUsWithoutUs
Read 6 tweets
On this joyous inauguration day, we're republishing our Letter to President Biden @POTUS on Disability Policy, with renewed enthusiasm and hope for how the Biden Administration can best serve its autistic and disabled constituents.…

#neurodiversity 1/
Your disability policy makes us hopeful about the future for our autistic children with high-support needs. Thank you for taking the ADA, disability rights, inclusion, and QoL issues seriously, and also for addressing how the COVID-19 pandemic impacts the disability community. 2/
Many of our children are already adults, and many require full-time supports, which means we share your concerns. We also want to emphasize areas in which the Biden Administration can deepen and reaffirm its commitment to disabled people of all ages, and do the most good. 3/
Read 17 tweets
[THREAD] If you're an autistic activist who speaks, and you've recently joined the fight for the communication rights of nonspeaking autistic people, I want you to know that you're going to have opposition, particularly from ABA people. This thread is to help you in that fight.
Your priority shouldn't be policing person-first language and puzzle pieces, or people calling themselves 'autism moms'. Those things can wait. Your focus should be on communication access for their children. You need to SUPPORT them in getting that. They may not know it exists.
I have been in this area of advocacy for several years now, as a speaking autist advocating for nonspeakers' rights, and I am able to share some of my learning with you on what works and what doesn't. You win some, you lose some. Let's learn together.
Read 66 tweets
#ControlIQ Tandem T:slim #closedloop's aim at improving #TIR. To activate Control IQ, are required:
▶️ current weight
▶️ total daily #Insulin
▶️ carb ratio
▶️ ISF
▶️ correction factors
▶️ meal bolus still required

#dedoc° #dedocvoices #EASD2020 @EASDnews #NothingAboutUsWithoutUs Image
36 wk-trial #ControlIQ in teens and adults in 2019:
▶️ #TIR +11% from 61 to 71%
▶️ major #BG improvement at night 2 to 8am
▶️ average #A1c 7% (#PwD witth A1c >6.5% improved too)
▶️ less #hypos
- Dr Marc Breton, University of Virginia

#dedoc° #dedocvoices #EASD2020 @EASDnews Image
#ControlIQ in real life for 6086 users, average age 42yo, for 6 months:
▶️ #TIR 74.9% for 180 days
▶️ consistent improvement in #BG control
- Dr Marc Breton, University of Virginia

#dedoc° #dedocvoices #EASD2020 #EASD @EASDnews #NothingAboutUsWithoutUs Image
Read 5 tweets
The implication of the wider spread of #DIYAPS on out-of-pocket expenses for people with #T1D- Timothée Froment on the conomic burden associated with #diabetes technologies

#dedoc° #dedocvoices #EASD2020 #EASD @EASDnews #NothingAboutUsWithoutUs Image
The amount of out-of-pocket expenses for people with #T1D depends on the limited health coverage of #diabetes technologies & supplies in most countries
- Timothée Froment

#dedoc° #dedocvoices #EASD2020 #EASD @EASDnews #NothingAboutUsWithoutUs Image
Strong link between health coverage and out of pocket #diabetes expenses. The monthly average cost is:
▶️ $39 in Germany
▶️ $502 in the US
- Timothée Froment

#dedoc° #dedocvoices #EASD2020 #EASD @EASDnews #NothingAboutUsWithoutUs Image
Read 5 tweets
Evaluation of the #OmnipodHorizon™ automated glucose control system in children with type 1 diabetes:
* Connected to #DexcomG6
* Algorithm built into the pod
* Phone controller or PDM
- Dr Gregory Forlenza

#dedoc° #dedocvoices #EASD2020 #EASD @EASDnews #NothingAboutUsWithoutUs ImageImageImageImage
Evaluation of the #OmnipodHorizon™ in children with #type1diabetes: usual drop in #TIR during the winter holidays. Study started during a challenging time - Dr Gregory Forlenza

#dedoc° #dedocvoices #EASD2020 #EASD
@EASDnews #NothingAboutUsWithoutUs Image
Evaluation of the #OmnipodHorizon™ in children with #type1diabetes:
* reduced #BG variability
* #Hypo reduction
* 59% users chose the 110mg target (free choice)
- Dr Gregory Forlenza

#dedoc° #dedocvoices #EASD2020 #EASD
@EASDnews #NothingAboutUsWithoutUs ImageImage
Read 4 tweets
For @tadorna, #Covid19 made him feel like a #patient - again. We should not ever let #diabetes define us. It made him feel vulnerable because of this whole lot of uncertainties. Lack of #insulin and supplies was a worry.

#dedoc° #dedocvoices #EASD2020 #NothingAboutUsWithoutUs Image
For Bastian, #PeerSupport was key during this #pandemic. #telehealth for him is uploading his data and having a Zoom call with his endo. We #PwD want digital AND personal interaction with our #HCP.

#dedoc° #dedocvoices #EASD2020 #EASD @EASDnews #NothingAboutUsWithoutUs @tadorna
The Impact of the #COVID-19 Pandemic on Diabetes Nurses in Europe: A pan-European Survey showed that there's been a significant increase in #anxiety for people living with #diabetes during the pandemic - Rita Forde

#dedoc° #dedocvoices #EASD2020 #EASD #NothingAboutUsWithoutUs
Read 3 tweets
#Diabetes should become a political priority. Every 8 second, a #PwD dies because of #DiabetesComplications. Are we doing the best we can to prevent this? - Dr Maurizio Guidi

#dedoc° #dedocvoices #EASD2020 #EASD @EASDnews #NothingAboutUsWithoutUs Image
We need to invest in #innovation to prevent #complications, and improve the quality of life of people #QOL with #T1D and #T2D - Dr Maurizio Guidi

#dedoc° #dedocvoices #EASD2020 #EASD @EASDnews #NothingAboutUsWithoutUs
The voice of those, the #PwD, living with this disease must be heard - Pr Chantal Mathieu

#dedoc° #dedocvoices #EASD2020 #EASD @EASDnews #NothingAboutUsWithoutUs
Read 4 tweets
#Islet cell transplantation aims at recovering #HypoAwareness & making #T1D insulin independent though #insulin can still be needed. 30% of transplanted #PwD don't need insulin after 10y - Dr Marie-Christine Vantyghem

#dedoc° #dedocvoices #EASD2020 #NothingAboutUsWithoutUs
People are still dying today waiting on transplant waiting lists - Pr François Pattou, Lille, France
Patients tend to reduce their #BMI after #islet cell transplantation. #C-peptide is then measured every 3 months - Pr François Pattou
Read 4 tweets
Impaired awareness of #hypoglycaemia: adults with long term #T1D have a lower hypo threshold. Older #PwD have reduced warning symptoms.

#dedoc° #dedocvoices #EASD2020 #EASD
@EASDnews #NothingAboutUsWithoutUs Image
#hypoglycémies peu ressenties : les adultes atteints de #DT1 à long terme ont un seuil d'hypo réduit. Les personnes plus âgées ont des symptômes d'alerte d'#hypo réduits.

#dedoc° #dedocvoices #EASD2020 #EASD
@EASDnews #NothingAboutUsWithoutUs #diabètedetype1
Need to address the lack of data in the elderly #T1D and #T2D population on #hypoglycaemia awareness.

#dedoc° #dedocvoices #EASD2020 #EASD
@EASDnews #NothingAboutUsWithoutUs
Read 3 tweets
@Insulet is working on #Omnipod5, their #closedloop system connected to the #DexcomG6 #CGM. The PDM will be similar to #DASH.

#dedoc° #dedocvoices #EASD2020 #EASD
@EASDnews #NothingAboutUsWithoutUs Image
@Insulet travaille sur #Omnipod5, leur système de #bouclefermée connecté au #DexcomG6. Le PDM sera similaire à #DASH.

#dedoc° #dedocvoices #EASD2020 #EASD
@EASDnews #NothingAboutUsWithoutUs Image
#Omnipod5 is actually Omnipod #Horizon 🚀
Read 3 tweets
#Omnipod #DASH's had a user centric approach for the PDM design. The average #A1c of Omnipod users is 8.1% - Dr Thomas Danne

#dedoc° #dedocvoices #EASD2020 #EASD
@EASDnews #NothingAboutUsWithoutUs Image
Omnipod #DASH is coming to Europe, soon in Austria, Belgium, France, Germany, Switzerland. Does that mean it will replace #Omnipod EROS?

#dedoc° #dedocvoices #EASD2020 #EASD
@EASDnews #NothingAboutUsWithoutUs…
#Omnipod #DASH a adopté une approche centrée sur l'utilisateur pour la conception du PDM. L' #HbA1c moyenne des utilisateurs d'Omnipod est de 8,1% - Dr Thomas Danne

#dedoc° #dedocvoices #EASD2020 #EASD
@EASDnews #NothingAboutUsWithoutUs Image
Read 4 tweets
You want to know what the Kavanaugh hearings did for me? When they ignored the fact that their candidate had ruled in favor of forcing women with disabilities to have abortions? Sure. Let's call it radicalization.
During the Kavanaugh hearings, I worked for an organization that takes positions on judicial nominees based on their prior decisions. I now work for an organization that broke decades of precedent to oppose the Kavanaugh nomination because of his disability jurisprudence.
Liz Weintraub, @Tuesdaywithliz, was the first openly disabled person to testify in #SCOTUS confirmation hearings and her testimony was incredibly powerful:…
Read 5 tweets
Bravo 👏🏻 👏🏻👏🏻 to @Alberta_Pain. Pulled up their ‘Conference At a Glance’ & what do I see? People with #livedexperiences on the agenda. Thank you! Recently another #pain conference was held void of those w #livedexperiences. One ☝🏼 presenter, a #physician defended
the absence (or imo exclusion) of those w #livedexperiences by indicating #painpatients would not benefit due to the complexities of the information, nor would this #physician want those with #pain at the conference. My position as a #caregiver as well as advocate for 2/
better pain care, ‘nothing about us without us’ and to be blunt if you have difficulties as a #physician with having those with #livedexperiences participating, you need to evaluate your own issues. As an #American I give kudos to #Canada. I am impressed with their 3/
Read 5 tweets
How quickly some forget. Journal articles, research reports, oral histories, and crimes stats all document upticks in anti-Muslim sentiment and violence in the aftermath of 9/11.
We must tell our stories — because others attempt to tell them (incorrectly) about us. It's one of the many reasons why I love oral histories. Talk, and listen, to people who've actually lived the experience. #NothingAboutUsWithoutUs #September11
If you're interested in oral accounts of 9/11 — from folks who were there — you can read stuff like Chief Robert Gray (from Arlington County Fire Department) talk about leading a rescue team in search of people trapped at the Pentagon. Image
Read 5 tweets
It's tomorrow, so, for better or for worse, I'll talk about the interesting exchange that happened last Friday at the @DRC_AU #DisabilityRoyalCommission where the lawyer for the Commonwealth jumped the gun and started claiming Cabinet-in-Confidence before anyone had said a word.
2/ I'll be doing that at some personal risk, I guess, seeing as I have spent the past several months defending myself against a professional onslaught that occurred after I had the temerity to criticise the government's plan, which several stakeholders were involved in.
3/ I do not know anything about that, but I do know a lot about advisory groups. I have been on many. One of the men I esteem most in the world sat on that group and any criticism of the final plan is NOT leveled against any of my colleagues or any individual.
Read 48 tweets
At the risk of further censure and unpopularity, here's a bit of a run down on the #DisabilityRoyalCommission last week re #COVID19Aus. May be of assistance to journos and advocates, especially around government response and What Actually Happened (people died, froods)

Day Four.
2/ The first fella up was Simon Cotterell. He's not a bad guy, I heard. First Assistant Secretary, Primary Care Division in the Department of Health and the guy Taking the Heat for the government.

Sorry, Simon. That was a shit day. You looked like you wanted to go home.
3/ @lukehgomes tweeted some of this here.

I'll add at the comment that 'Commonwealth lawyer jumped the gun' - if I was watching this, I would be asking exactly why the Commonwealth wanted to invoke secrecy around this.

Because I am betting reasons.
Read 39 tweets

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