Discover and read the best of Twitter Threads about #nothingaboutuswithoutus

Most recents (16)

Finding disabled actors "takes time, it's a very long casting search. You can absolutely do it; it just takes time and resources, neither of which we had. So it was like, we have six months to either not make the movie or-" Let's stop there. 1/12…
Many filmmakers say they want to tell disabled stories w/ good representation. If you're one of them, ask yourself this: If I want good disability representation, but can't be bothered to understand why cripping up is a problem, do I really care about representing disability 2/12
or am I just using disabled stories for my own benefit/amusement? A comedy like #ComeAsYouAre, by casting nondisabled actors is using disabled people as clown characters upon which to project able-bodied anxieties about disability. 3/12
Read 12 tweets
I am encouraging a boycott of autism research participation by autists and parents of autistic children, unless autistic people are involved in setting the goals of the studies. Don't participate just because it's about autism. The study design and ethics may be up to maggots.
People who participate in ethics committees are not necessarily trained in the #CRPD. In my experience, many of those people are clueless about the realities of human rights.
A simple example is that many of the supervisors and ethics people insist on researchers using person-first language in research papers, which is exactly what most autistic participants in English-speaking environments DON'T want. (This is, like, 'Autistic Culture 101'.)
Read 216 tweets
Now attending the #ESHG2020 session on neuropsychiatry. As an #ActuallyAutistic person, this was very insightful. The research presented was also interesting, but what I gained most insight in was how autism is viewed and talked about. And it needs to change. (1/n)
Autism is still seen as a disease. While there are definitely impairments, in some people more than others, these are often impairments that can be improved by talking TO the autistic person in question about their individual needs. (2/n)
Some autistic people have bigger impairments, which are often due to intellectual disability. Again, communicate WITH the autistic person to facilitate them. Good to realize that some autistic people are non-verbal, but there are alternatives to verbal communication. (3/n)
Read 8 tweets
I find the knee-jerk reaction from climate orgs about caronavirus, decarbonisation & climage action really concerning, as disabled climate activists are being left out of the conversation, and the result is harmful and ableist narratives.

For decades, disabled people have been portrayed as disposable across society, and this has been reinforced by mainstream environmental campaigning, particularly on issues like straw bans, plastic packaging, & public transport.
These campaigns have consistently painted a story of disabled people and accommodations or tools we need to survive as lazy, or inherently against climate action. It's meant that many disabled climate activists have been left out, and campaigns have caused our communities harm.
Read 7 tweets
“Special needs”... 6 times in under 60 seconds

“Take this burden off of the communities”...
I heard this last night.

My pain level was so high, I was wishing I had *safe* access to an emergency room where I wouldn’t be labeled as “drug-seeking” & discharged in worse condition. But I don’t, because chronic pain patients aren’t treated with respect or dignity.
So instead, I tried to watch the debate, as a distraction, in between pain so intense it was making me vomit and doing breathing exercises so I wouldn’t pass out.

I couldn’t watch the debate. The moving background made it inaccessible.
Read 25 tweets
Putting it out there. In the next election cycle i want to see #disability orgs invited by non disability orgs on town halls focused on education, healthcare, environment. We are here (& 20% of your members) even if sometimes you want to forget about us. #CripTheVote
It kills me to watch things like the #PublicEdForum and hear repeated questions about students with disabilities and know we weren’t invited to co-host or partner. #NothingAboutUsWithoutUs #CripTheVote
Folks talking about #PreExistingConditions , #opioids, #MedicaidExpansion , environmental justice, and act like we aren’t the ppl you are TALKING about. Those kids impacted by lead turn into US. We are preex. We are folks needing pain management. But you silence us #CripTheVote
Read 3 tweets
Today, we received a leaked press release from Mayor Wheeler’s office. We learned that on Friday he plans to announce climate commitments + thanked youth climate activists for ‘working with the city.’

To be clear: we were not a part of these discussions. #nothingaboutuswithoutus
The bullet points indicated as part of Mayor Wheeler’s climate proposals and accomplishments were already in motion + came from the hard work of many bureaus, committees and commissioners. As for the first point, the mayor is required by law to appoint the PCEF advisory committee
Regardless, not a single one of these bullet points is on the level of action needed to properly address the climate crisis at the scale it requires. While we are cited as inspiration, if we’d had a seat at the table, we would have been clear: this is nowhere near enough.
Read 8 tweets
Autism in academia. A thread.

#Autistic people often have intense interests. These can quite quickly become areas of specialism & expertise.
Presumably, universities would have high numbers of autistic people, surely?
#ActuallyAutistic #AllAutistics #AutisticsinAcademia /1
It's hard to know.

I began my PhD 10 years ago. I've yet to meet a scholar or student who is openly autistic. I am literally the only one I know. I 'network' a lot, I've worked in 3 institutions.
Not one person.
On Twitter, there are a fair few of us. Many autistic scholars specialise in autism research. This is extremely important. #NothingAboutUsWithoutUs

Why is it so hard to find other autistic academics 'on the ground'?
Read 15 tweets
[THREAD] I want to tell you about Spelling to Communicate, a method for non-speaking autistic communication that I helped to bring to South Africa along with Nicola Sowah (a speech & language therapist) and Luli Carillo (mother of non-speaking autist Leonardo).
Spelling to Communicate (S2C) teaches individuals with motor and sensory differences the purposeful motor skills necessary to spell to communicate. Motor skills progress along an increasingly complex hierarchy from pointing to letters to typing independently on a keyboard.
The goal is to achieve synchrony between cognition and motor.
Read 49 tweets
Pulling some important quotes from (thesis-related) close reading of the @autselfadvocacy Navigating College handbook. #AutisticsInAcademia #helenreads
“Remember one thing: You made it to college because you have potential. You are in college because you demonstrated capability to get here.” -Samantha April Davis, Worth
“Consider applying to the disability office under a related condition, such as anxiety.” -Samantha April Davis, Self Accommodation

This is crucial for people who are self-dx and/or don’t have current documentation of certain disabilities.
Read 16 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
While it's nice to see @Spectrum talk to #ActuallyAutistic voices, there are a couple of important factual errors and (I assume) inadvertent misrepresentations in this piece. Thread to follow.
First, because it's most important, the federal rules referenced here don't say anything about the size of the setting people live in - instead, they talk about the rights people have within a particular setting:…
I can understand how the author may have been confused on this point, since NCSA and other opponents of federal regulation in this space have repeated that (false) talking point frequently, but the actual text of the rule makes no reference to size.
Read 29 tweets
What’s that you say? I haven’t tweeted in a few days about this AMAZING JOB w @AutisticaUK & @turinginst that I’d love for you to apply for or share with anyone you know?

GO ON THEN. A thread about our values and project outcomes! 🌟🙌🏿🙌🏾👩🏻‍💻👩🏿‍💻👨🏼‍💻👨🏾‍💻😬🥰💖🥳…
The values are attached as a pdf to the job description linked above. Here’s the direct link:…

Before I dig into them I want to give a quick shout out to Georgia Aitkenhead who wrote the first draft based on our long conversations. THANK YOU Georgia!
The values are only loosely ordered. Don’t read too much into which ones come first etc. They’re ALL important.

When you apply for the job PLEASE address the values in your cover letter. It’s an essential requirement that you have a commitment to these values.
Read 18 tweets
I just met a dad and his autistic son. Behaviors which had puzzled the dad for years I was able to instantly translate. It reinforced my frustration with the foundational things routinely missed by the autism industry - and why every autism entity NEEDS to hire autistic staff.
He told his son to say hi to me and the son whispered “Nooo!” and walked passed me. “I don’t know why he does that,” the dad said.

Me: “Often, placing sudden attention on us and putting us on the spot to do something can feel hugely uncomfortable. It’s a normal response.”
The Dad: “This is great advice. I wish he has listening to this.”

Me: “Oh, he’s listening. You’re listening to this, right?”

Voice of a kid hidden around the corner: “Yes!”
Read 12 tweets
In #FordNation's backlash dystopia, #OpioidSymposium2018 kicks off. @CAPUD2016 @momsstoptheharm, me & many others present tomorrow. Will ON minister of health @celliottability decide we "have merit" and drop by? Watch the livestream tomorrow to find out:…
Rally for Overdose Prevention Sites. Let's tell those Ford Nation deniers that OPSs "have merit." Help or get out of the way. Tomorrow. 12:30. Toronto. Outside of #OpioidSymposium2018 @TorontoOPS…
#OpioidSymposium2018 live streaming now in TO. Drug users sitting at the front. Represent!…
Read 67 tweets
So excited to spend my afternoon at the #TransHealthLeeds book launch! First up: what is dysphoria, with Zowie Davy and Michael Toze
"I hope there's not many psychiatrists in the room, because you're going to get bad press today" 😂
Language in trans medicine becomes "a truism without substance" and is used to exert control over trans people and their transition
Read 22 tweets

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