Categories
Treatment

Compliance

People who can’t say no, can’t say yes meaningfully. […] Making the best of a bad situation isn’t consent.

Ruti Regan

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when you’re working for rewards, not getting them is a punishment

Birdmad Girl

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Successfully modifying a behavior is not the same as understanding why someone was doing something, and it is not the same as meeting their needs.

Ruti Regan

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[…] ‘compliance’ as if it were the answer.

Just follow this beautifully laid out plan replete with measurable goals with neat little timeframes and clearly named people assigned to each intervention, and all will be right with the world!

what must someone give up of their own desires, wants and most intimate beliefs in order to give in?

While non-compliance isn’t an easy answer anymore than compliance is […]  Non-compliance saved my life.  And not because I did brilliant things instead of what people were instructing me to do.  I absolutely did quite the opposite of that.

But I got to keep my fire and my sense of self while doing an array of stupid and risky things, and what that meant was that when it came time for me to get a little smarter about living, I had the energy and drive left to do something about it.

Out of context, Sera Davidow

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[…] It relies on continuous extrinsic motivation, which means conditioning the person it’s being done to to comply with a lot of things that they’re actively unwilling to do for several hours a week over and over. It means making them do things that make no sense to them, over and over for many hours a week. That’s dangerous. It’s especially dangerous for people with disabilities who have complex communication needs.

It’s dangerous to make a kid do things that make no sense to them over and over and over while relying on extrinsic reinforcement. That teaches them that people in positions of power can do whatever they want to them, and that they have no right to protest or understand or influence things. It leaves people subject to it very, very vulnerable to abuse. Extreme conditioned obedience is dangerous, and it’s the most persistently reinforced behavior in it. It’s generalized to other environments, and does not go away once therapy ends.

Ruti Regan

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Categories
Definitions & Characteristics

Atmosphere – Rays (Part 3)

When I say things like “I don’t believe in the diagnoses in the DSM,”

that does not mean I think people are faking it, or making their experiences up. […] Their experiences are absolutely, definitely real.

[…]

I agree that we need a language,

but I disagree that the DSM provides a good one. […]

Out of context, Sarah K Reece

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Diagnosis recognizes reality; it doesn’t create it.

The way medical diagnosis works can often make disabled people feel fake. (Any kind of disabled people, including people with mental illness or chronic illness). There’s a widespread culture misperception that real disabled people have a clear professional diagnosis, and that everyone else is just faking it for attention or something. It doesn’t actually work that way. Diagnosis is more complicated than that.

People with disabilities are disabled whether or not anyone has diagnosed their disability. […] But it doesn’t change the reality. Someone diagnosed today was already disabled yesterday. Many people are disabled for years or decades before they get access to accurate diagnosis. […]

In addition, some conditions aren’t currently diagnosable, because they have not yet been identified and named by doctors. If a condition was discovered for the first time today, someone had probably already had it yesterday. And last year. And back and back and back. […]

Ruti Regan

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Words, like the chisel of the carver, can create what never existed before rather than simply describe what already exists.

Martin Heidegger

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Was There an Autism Before the Name?

Were we here before the world called us ‘autistics’?

Was there an ‘us’ or a ‘we’ before we and the world called ourselves so?

How were we, autistic people, autistic, before we actually were autistic?

Adapted from writings by Dallyce Potess

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Categories
Definitions & Characteristics

Atmosphere – Rays (Part 2)

Before, I was me and autism was autism.

After learning that I have autism, I was no longer me and autism was no longer a label applied to others.

Suddenly, I was autism and autism was me.

After, everything I do, say, think, feel, and experience is autisticized. […]

Out of context, Cynthia Kim

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The problem lies not in the pervasiveness of autism in me as an individual, but in the pervasiveness of its use as an ‘explanation’ at the level of specific, observable behaviour – an account for everything that I am and everything that I do.

Gill Loomes

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They were conferring any and all agency to my supposed disembodiment, or my supposed disenmindment. I didn’t want this because I was autistic. I didn’t want that because I was autistic.

This is, to the best of my memory, when their ventriloquism started.

Suddenly, the experts claimed, I wasn’t talking. God, no.

“That’s your depression talking,” they explained. “That’s your autism talking. That’s your anxiety talking.

Really, it’s anything but you talking.”

Regardless of what I said, it was my autism saying it. My body became site for ventriloquist rhetoric, spewings that never were.

What did they write in their charts? I imagined […] that they mapped the ebbs and flows of my echolalia, in echolalia.

“That’s just her autism talking,” the clipboard repeats, like a running toilet. “That’s just her autism talking, talking, talking. That’s just her – autism talking.

Melanie Yergeau

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1

Whenever we talk about ourselves we tell stories.

Without these stories, our experiences would sit, unconnected.  They would be like a thousand tiny beads.  Telling our story helps us to weave connections between these beads.  It helps us link them together with different threads, to create a tapestry full of meaning.

This is a fluid and continually evolving process.

Each new experience, interaction or connection reveals new aspects of the picture we are continually creating.  It shifts and changes as we, ourselves, shift and change.

Reflecting our experience of the world, this process can be terrifying and confusing, as well as beautiful and rewarding.

***

In some settings, something profound happens to these stories.

It’s as if someone takes your tapestry, and labels it as defective.  Then, they give you the pattern you need to rectify your mistakes.

Unquestioningly, you unpick your tapestry.  You weave, instead, the beads of your tapestry together to form the pattern they gave you.  You weave their pattern, and you form the picture they showed you.

With each stitch, those around you nod and praise your keen insight.

After a while you forget you ever had a story of your own.

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2

For a very long time, you had been weaving your story your entire life.

At a point in your journey in life, this story overwhelmed you.

At this point, you were given an alternative – a new pattern to help impose some order on the chaos.  You were offered new, independently created stories that would explain your sometimes difficult, challenging experiences.

You met many kind people who gently reassured you that they knew exactly how to tell your story.

On adopting their perspective you felt relief.  It stripped your experiences of their power; it removed any need to further explore their meaning.

Content that your tapestry was complete, you put down your needle.

You focused on living with the picture you now knew you had.

***

Of all the beliefs that you have had about you experiences, the belief that has replaced your previous tapestry was the most damaging.

In adopting the story that others told about you, and abandoning your own sense-making process, you held on to a belief that rendered your experiences irrelevant.

As a reader, one may feel this was the lesser of two evils.  After all, the story you weaved for yourself overwhelmed you, to great extents.

Still, this belief was woven from the beads of your experience.  It contained truths of things you were unable to face.  It was something that, with the right support, you could work through and understand.

The perspective they gave you, however, led to a dead end.

***

You sometimes reflect on what it was that allowed their story to replace yours.

Every person that spoke to you about the picture of your tapestry only served to reinforce that which you were already primed to accept.  That, among other things, you were flawed, and vulnerable, and that your experience of the world was mistaken.

Their story offered you both condemnation and salvation.

It gave you validating answers and explanations for some of your unsolved beliefs and experiences.  It promised you the gift of living well with your reality, as long as you weaved and stitched your story and your experiences only in the ways they – wisely, unmistakably, reliably – pictured and weaved those (your) experiences.

It’s a powerful and seductive story, and one that has taken you a very long time to untangle.

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Adapted from a post by Rachel Waddingham

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iatrogenic effects […] power imbalances, vulnerability, adaptation, and living to labels.

[R]esearch consistently shows that people live to their labels – children treated as smart do great in tests, those treated as truants act out, those treated as caring are kind.

We know this, and have demonstrated [over and over again] the powerful effects of labels, obedience, authority, and adaptation […]

Sarah K Reece

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Categories
Definitions & Characteristics

Atmosphere – Snowflakes (Part 3)

Theory of mind does violence to autistic people.

Autistic people lack a theory of mind (ToM), so it is said. Autistic people can’t know that other people are people. That they have bodies, unique mental states, lives, experiences. That other people know, want, feel, and believe things.

To have a ToM, it is believed, is a very human thing. To know that other people are people, and that you yourself is a person. To know that people are not mindless bags of skin moving through space.

On one hand, are the humans who do have a ToM. On the other hand, are those distant Others who do not.

ToM is always a binary.

ToM is always a dichotomy between the human and the neurologically impaired.

Autistic bodies are violently absent. The absence of a body suggests that violence cannot be done to it. The absence of a body is the erasure of the violence done to it.

ToM is defined by a negative. ToM relies on a circular logic. We know that autistic people lack a ToM because non-autistic people have a ToM; we know that non-autistic people have a ToM because autistic people lack a ToM. This is what we know – what we think of as fact and hold onto as true.

Non-autistics’ failures mean they are simply human, but autistics’ failures show their impaired ToM. Autistics never have natural ToM. Any ability they demonstrate, however, means they are merely hacking, passing, faking.

In the same way that autism is the boundary for the (in)human, ToM is the boundary for the (non)story.

ToM, it is said, is based on absolute, on empirical fact. ToM represent where a story cannot be trusted.

There are plenty of dichotomies. Theories about ToM represent truth; theories about autistic personhood do not.

Autistic people have come to represent the limit of the inhuman, all in the name of facts, in the name of ToM.

The autistic is not trusted, is not reliable, is not accurate. Any claim coming from a ToM-impaired autistic body can be refuted by everyone with a ToM.

Theories about ToM tell stories about the violence against autistic bodies. They enable the violence, explain the violence, defend the violence.

What matters are the feelings and attitudes of the non-autistic. What matters is what the non-autistic thinks of the autistic.

The autistic body is nonexistent; the autistic body’s story is told by the non-autistic.

Based on an article by Melanie Yergeau

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Nevertheless, even if intelligence is only a matter of appearances, appearances matter. […]

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In-group, out-group:
The place of intelligence in anthropology

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1

(status)

Disputes about intelligence are disputes over status.

Status is usually seen as a two-tiered structure:

  • at the upper level, an abstraction of social goals;
  • at the lower, any concrete evidence or collateral one might have for claiming it.

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2

(bidding)

Intelligence is not itself concrete collateral: it brings no offering to the great god Status except the promise offered by the word itself.

That is because it is wholly internal to the game of bidding for status […] It belongs in the realm of appearances and mutual recognition alone.

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3

(self-referential)

[Intelligence] connects status at its higher level, as an abstraction of values and goals, to its lower level, as concrete collateral to be used in support of a bid.

This is why […] people claiming status will talk about their intelligence as if it was self-evident when actually the term is purely self-referential.

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4

(claim to status)

Intelligence, [like honour and grace], fills the round hole of individual human uniqueness with the square peg of abstract hierarchy.

Like them, it creates not just an in-group but an out-group that is definitely disqualified from entering the bidding in the first place.

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5

(sanctity)

Intelligence sanctifies the person. It confirms the legitimacy of an individual’s behaviour by referring it to an external authority.

[The psychologist allocates IQ scores (to the intelligent, as a sign of intelligence). Similarly, it is the king who disburses honourable titles (to the noble, as a marker of honour), and it is God who dispenses grace (to the elect, as a confirmation of grace).]

Although this authority is arbitrary, in receiving its blessings we abnegate our right to question it,

thereby binding ourselves to accept practices which a different generation, in different historical circumstances, might regard as utterly wrong.

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6

(exchange)

Intelligence is a form of apparently equal exchange amongst creatures who are actually inequal. […]

The relationship between the intelligent and the intellectually disabled is one of exchange, inasmuch as the credit of the one could not exist without the debit of the other; it takes place without the awareness of either, or perhaps only with the awareness of the latter.

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7

(randomness)

We have already seen that the procedure for establishing intelligence as a scientific concept consists first in conjuring up the notion of a mean purely as such. Subsequently, and only subsequently, this mean becomes something concrete […]

Intelligence [is] what those with the power say it is, as were honour and grace: a dummy category, a magic hold-all into which they can pack whatever they like according to purpose.

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8

(biological hierarchy)

Nevertheless, [intelligence] does have one constituent that covers all contexts: intelligent means better.

The word can only function as a disguised comparative. True, so do all descriptive terms in the human sciences. None is neutral.

But ‘intelligent’ is not only value laden, it is content free. […]

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9

(merit)

Status by its very definition consists of ranks; and if that is the case, then abilities too must come in ranks, otherwise there would be no way of pegging one to the other. […] But [what] constitutes the merit of one sort of ability against another?

[…] Meritocracy (some abilities are more equal than others) is at one with conservatism (hierarchy is natural). One’s level of intelligence both determines one’s vocation or calling and is that calling, one’s place in a natural social hierarchy […] Meritocracy cannot favour ‘ability’ over bloodline or wealth without passing hierarchical judgements that involve matters intellectual and their concomitant social and political interests.

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10

(consensus)

In […] confusion, the purely nominal classification of certain abilities as intelligent or intellectual is passed off as real.

I may be especially able at maths, for example, or ironic humour, or orienteering, or recognizing another person’s concealed emotions. The only thing they have in common is that I can be judged as being better or worse at them. That judgement may in some cases be real enough.

But to be useless at maths or orienteering is a chosen characteristic of intellectual disability, to be useless at ironic humour or perceiving hidden feelings is not; and in fact some people labelled with severe intellectual disability are better at ironic humour and perceptiveness than some people classed as highly or just normally intelligent.

No distinction between intellectually better or worse can exist unless some temporary, subjective and purely human consensus has been reached as to which particular abilities ‘intellectual’ or ‘intelligent’ covers and which not. Talking about emotional intelligence, which might seem to cover humour and perceptiveness, does not solve the problem, since exactly the same point can be made here too.

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11

(nature)

One might [think that, surely, the intellectual hierarchy] cuts out at some point near the bottom of the scale, where the selection of certain abilities as intellectual becomes no longer merely consensual but is indeed objective, separating off a discrete set of really intellectually disabled people who are therefore exempt from an otherwise historically constructed group. Surely there must be some such creatures.

But the exemption would only work if one were already assuming that they exist separately in nature as some biological subspecies, which is indeed the historically contingent premise on which the modern notion of intellectual disability has been built. They are exempt from egalitarian principle only because that principle, in order to exist at all, has already exempted them.

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C.F. Goodey

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