Heartbreaking. Profoundly moving. Thank God for the Ayalas, and for the broader #disabilityawareness activists have fought for. #longread #disability #institutionalization

https://www.theatlantic.com/magazine/archive/2023/09/disabled-children-institutionalization-history/674763/

A federal judge has ruled that #Florida has been unlawfully segregating #children w/complex #medical needs & putting other disabled children at risk of unnecessary #institutionalization. The judge, who issued the ruling Friday, said that by failing to provide #Medicaid services that would pay for private nursing care & allow children to live in home settings, the state was in violation of the Americans With Disabilities Act.

#ADA #law #legal #DOJ
https://www.washingtonpost.com/wellness/2023/07/19/florida-disabled-kids-institutions-judge-ruling/

Here’s your periodical reminder that the primary purpose of #institutionalization of #disabled folks has always been the prevention of reproduction.

And that #EugenBleuler was a humanist.

Over the past few days I've been trying to transform quotes from my research on peer support institutionalization into little comic strips -- here's a sneak peak, featuring one of my favourite discussions of ours!

#PeerSupport #Research #MadStudies #Madodon #MentalHealth #Healthcare #Institutionalization #InstitutionalEthnography

(my thesis & an 11-page plain language summary are available here: http://hdl.handle.net/11375/28026)

Please boost my shot about #CafePlume idk if my brother is safe and **** is in therapy mosdef means he is being institutionalized, probably with the wrong DX, his mother ain't safeb noone around him is safe.

My mother called us her #Slaves, back then I got angry at her on account of the fact that it was inapropriate, but if the shoe fits?

I kept my mouth shut because I did not want to see my mom on the front page of the #Bildzeitung but where the fuck is my brother?

We both deserve apologies, compensations and reparations but that doesn't matter right now, I want to know that my brother is safe.

Where the fuck is Timothé Crouzet?

#Berlin #BerlinNeukoelln #WtfIsTimo #Institutionalization #CafePlume

Part 2

A fractal is something that is shaped the same way on the outside and on the inside. When you look at it from far away, it has a shape. And when you look at it really close, it's made up of millions of pieces that have that same shape. There are some fractals in nature. Many plants like ferns, succulents, pine cones, and even some broccoli have a spiral shape that is a fractal. Lots of things made by water, like snowflakes and rivers, have a fractal shape. Trees can be fractals too. Their shape follows the same rules from trunk to root, branch to stem, and even the veins in leaves.

When I thought about NeoLiberation, I thought about Fractals. I thought about fractals because whether it was the hospital or the classroom, the group home or the community, the rules were the same. The rules that say "you cannot be here unless you act a certain way, are shaped a certain way, look a certain way".

If you lived in a state hospital, they said you were institutionalized, because you lived in an institution. Abolishing state hospitals was called "deinstitutionalization". What really happened was that many people were moved from large institutions to smaller ones. This was called "transinstitutionalization". Many of the rules were the same in these smaller homes. You still weren't in charge of your life. It was like a fractal.

Many people talked about "inclusion" as a way to make sure disabled people were together with non disabled people in the community. It was supposed to be a movement to change society so that disabled people wouldn't be kept out anymore. Instead, what often happened, was society stayed the same, and instead an "inclusion program" became one where they would work to change the disabled person so that they would "fit in". The rules stayed the same. Inclusion became like a fractal.

But remember how I said there were things in nature that were fractals? Those were beautiful things. Why are the fractals in this story so ugly?

It's because the fractal isn't the institution or neoliberalism. The fractal is us. Social relations follow fractal rules. Activist scholar Adrienne Maree Brown has also used fractals to describe social movements—“what we practice at the small scale sets the patterns for the whole system” (2017, 41).

There's something else about fractals you need to know.

The rules can be changed.

And when the rule of a fractal changes, it changes the whole shape. Inside and out. Big and small.

So neoliberalism is a rule set that makes us build ugly, violent, deadly fractals.

What rules make us build beautiful, gentle, life giving fractals?

Huey P. Newton (2019) teaches us three key things —that “everything is in a constant state of change” (193), that we must act as if our action have direct consequences on other people and the world, and that to do this you must always be thinking about how your actions change the world and that the world is always changing. To act in Solidarity with others is working together to help each other even when they are not like you, or even when they cannot help you in return. It is understanding that you have to respect someone in order to help them.

Fractals can also be people working as collective agents of change. Justice is created in collective action because it is impossible to do justice if you decide what it is for other people. Each action either keeps or changes the fractal rules. We are always at step zero in a new world and must act with the understanding that each moment is a practice of worldbuilding.

I will finish this summary by telling three stories about how disabled community can show us how to build new worlds by making new fractal rules.

Story A: Ames and Oli live on opposite sides of the country. Separated by thousands of miles, they are connected digitally and spiritually by shared experiences.

Ames: Hey

Oli: Hey!

Ames: Tag yourself, I’m executive dysfunction.

Oli: lol mood

Ames: yeah. But I really need to eat.

--incoming video call from Oli--

Ames: “Ha. Why did you call me?”

Oli: “Because we both need to eat. Let’s make lunch together.”

Ames and Oli are both neurodivergent and struggle with executive function—those cognitive processes that help you get from goal to action. Though their connection is “only” digital, this networked connection is no less real. Together, they can yoke their movements, “borrowing praxis” (Asasumasu 2015) and giving each other mutual care. By feeding themselves, they feed each other.

Story B: Every day, we check the board. We look for the names, the hospitals, the room numbers. We build the phone scripts. This one needs access to their AAC. That one needs the staff to follow the correct plan of care. That one over there needs dozens of angry phone calls to badger an admin into releasing a patient back to their community, instead of the home. The system, #BreakoutBot,6 looks up the admin phone numbers. The text messages go out. Like dandelion seeds. Thousands of angry, tired, loving crips dial in. “We are not disposable. Let my people go.

Story C: They got tired of the Zoom rooms long ago. Everyone said no, no you have to stay connected. Though they missed each other’s company dearly, they missed the absence of migraines more. It’s not that video calls aren’t “good enough” compared to other conversations…It’s just that…maybe the talking was never actually the point.

Instead, they exchange envelopes. No, not letters. They gave up words long ago. Exhausting things, words. Instead, they send crushed flowers, an interesting stone, papers etched with the skin of damp twigs…What does it mean when you send a flower and they send a stone? Well it’s not just the flower, and it’s not just the stone. The flower was purple, with white and blue too. The stone has sparkles, flint quartz, and lapis lazuli. The twigs were from the creek, where other stones were found. Maybe next week, they’ll exchange things that are round. For one it was a reminder that the earth makes beauty. For another a testament that the earth holds memory. The meanings are co-constructed, the practice collaborative. This, too, is conversation.

I will end this abruptly, because that is a very autistic thing to do. The point is this. We make the rules. We can edit all the fractals. Together.

https://catalystjournal.org/index.php/catalyst/article/view/33181/28261

#Fractals #ColiberationLab #TechJustice #DisabilityJustice #CripTechnoscience #Inclusion #Institutionalization #Neoliberalism #NeoLiberation #CollectiveAction

#PlainLanguage summary of "Six Ways of Looking at Fractal Mechanics"

This is in two parts. Yes. Even on Kolektiva where we have 10k characters.

This essay was very hard to write. Many people read it before it was finally published. Reviewers, people who read work before it is published and suggest changes, did not like my first draft. I wrote and rewrote this paper many times. I like it, in the end. But I am sorry that it is just as difficult to understand as it was to finish. I am going to try to summarize this one in plain language. I will probably have to try again when I am better at plain language writing.

One of the hardest parts about writing this paper was how often people wanted me to change the order. Another hard part was how academics do not like it when you write like an artist instead of a scholar. I am not saying that my writing is good art. But I wrote it almost like a poem, and I did this on purpose. Sometimes I think the fact that I was writing artistically is what made the reviewers so confused.

This will be both a plain language summary and a plain language story about why I wrote this paper, and how I wrote it.

These next parts are the parts that are the most like a poem. These are the parts I wrote because I wanted to help the reader to feel the things I felt. To be uncomfortable, sad, angry, but also to laugh. These were also the parts I wrote first. I first wrote these parts in the spring of 2018. The paper was not published until the fall of 2021.

Scene 1: The young women stand by their posters in the gallery. They are standing between a poster on the legacy of the sheltered workshop and the resistance of the disability community to one side and, on the other, a poster by undergraduate special education students about barriers to service access for “Adults with ASD.” Their own posters are of themselves. Their portraits, smiling. Their bullet points, describing. Their futures, absent. They stand, uncannily still, eyes deflected—on display. They have been included. They know, now that they are here, that they are here to be observed—not to be witnessed.

This scene is about something upsetting I saw at a meeting where disabled college students were presenting research. It became very clear that the students with physical and sensory disabilities had been allowed to conduct research projects, but the students with cognitive disabilities were only allowed to make posters about themselves. You could tell that they understood they had been treated differently, and that they didn't know they were going to be treated differently until they came to the meeting. There were also non disabled students presenting their research. This could have been a nice example of inclusion, except the non disabled students' research projects were about people with disabilities. Disabled students were included, but not respected.

Scene 2: He enters the auditorium. His body, familiarly unruly, comfortingly uncanny. I am entangled with cables, cursing the projector blustering about absent conference IT staff. His access needs are well known. His AAC is not a surprise. But the conference would not provide tech support, and he has been included. Equity is not justice.

This scene is about a meeting I went to where a non speaking person was presenting his work. There were ramps in the room, but no support for hooking his computer voice up to the speakers. He was included, but not supported.

Scene 3: We begin our panel. A strategic, calculated, and artful assault on the state of special education and education technology. We neuroqueer crip critics, masterful if uncanny orators, stand opposite a rookery of nonplussed vultures—special educators and their brood, here to observe autism “in the wild.” Our own people, our crip people, absent. We have been included.

This scene is about a time when I presented my work at a meeting with my friends. I was so excited to have my first chance to present my work in front of other disabled people. But most of them did not come. Some other session was more interesting to them. Instead, the people who came were mostly special education teachers. We felt like zoo animals. The only people that wanted to see us were people that wanted to compare us to their textbooks. We were included, but not loved.

Scene 4: We sit in the back of the ballroom. We pass notes like cheeky school children. We are in Autistic Space. Noises spill from his sinuses, filling the rafters on opalescent waves—sonorous, sublime. “Shhh,” they turn their vulture necks. Craning to see. Who dares to (neuro)queer this crip time? No Tourette’s, no unruly bodies. They only want us here if we can be quiet. Apparently, we are not includable.

In this scene, I was so excited to get to talk to my friend. My nonspeaking friend. To get to talk to him in his way - with pen and paper and screeches. But the only disabled people that belong at the meeting are the ones with quiet bodies. We were included, but not wanted.

These things happened at a meeting that was supposed to be run by disabled people, for disabled people. But when I was there, so many bad things happened to me and my friends. I was very disappointed, because the meeting was all about liberation, but I watched as disabled people hurt other disabled people. People were celebrating their power while disempowering others.

This is sometimes called "neoliberalism". To be neoliberal, or to do neoliberalism, is to say you are helping someone when you are only helping yourself. Specifically, it is to say you are doing something good for someone, but you are actually supporting the same system that harms that person in the first place.

Here are some examples. The Best Buddies program is a neoliberal program. It is a neoliberal program because it says it is a program to help people with intellectual disability find friends. To do this, the best buddies program signs up non disabled people who want to do charity work by being a friend to disabled people. But that's not friendship. It's pitty. So best buddies pretends to give you a friend while supporting the society that believes you can't make friends any other way.

The sheltered workshop is a neoliberal program. Sheltered workshops are neoliberal, because they say they are going to give disabled people a job, but really they are giving the disabled person a boring task for less than minimum wage. They give you a pretend job, like Best Buddies gives you a pretend friend. They support a society that believes you cannot do good work to support your community.

Many of the college programs for people with intellectual disability are neoliberal programs. They are neoliberal because they pretend you are going to college but they are really controlling what classes you can take and what you can study. They support a society that believes there are only certain things you can do with your life.

So I was very frustrated at this meeting because it was a neoliberal meeting. But it was even more frustrating because the people running it were disabled. I felt they should have known better. I joked that it was NeoLiberation. It was pretend liberation.

—

The neoliberal machine has come for inclusion.

Always watching, surveilling, assaying—neoliberalism snatches up our resistances. Categorized, analyzed, defined, discretized. Labeled. Branded. Repackaged. Capitalized.

A radical movement becomes a social movement. A social movement becomes a policy. A policy becomes a program. A program becomes an industry.

“We will be inclusive,” You say. “We will be welcoming,” You say. “We will empower you,” You say. I say, “Who is We?”

Inclusion has a flaw, you see. One that Neoliberalism has found easy to exploit. A software vulnerability, or perhaps a feature. Inclusion, unfortunately, does not necessitate the abdication of power. You offer me a seat. But it is still your table.

We are empowered to conform. We are welcomed to be observed. We are liberated into a NeoliberalLiberation.

Thanks. I hate it.

—

This feeling that I was feeling, this feeling of NeoLiberation, reminds me of a feeling that Sarah Ahmed wrote about in her book "On Being Included" - she wrote about "that feeling of coming up against the same thing wherever you come up against it." (pg. 175)

As I sat with this feeling, and thought about the "sameness", or the repetition, of what was happening between these scenes, I remembered fractals.

See reply for part 2.

https://catalystjournal.org/index.php/catalyst/article/view/33181/28261

#Fractals #ColiberationLab #TechJustice #DisabilityJustice #CripTechnoscience #Inclusion #Institutionalization #Neoliberalism #NeoLiberation #CollectiveAction