Listening

Previous (Part A)

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It’s […] important to realize that charting antecedents, behaviors, and consequences is not the same thing as listening to someone.

Ruti Regan

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Taking data is not the same as listening.

Ruti Regan

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[…] the figure of the hug-avoidant autistic child is a remarkably acontextualized figure; a figure with whom a receiving audience is not supposed to identify

in the case of autistics whose languages aren’t spoken or voiced, especially, framing a child’s bodily comportment as refusal attributes (non)intentions […]

When nonautistic publics mourn and inquire about the why – why would a child refuse a hug? – the why recedes from the rhetorical and moves into the neurological

The hug-avoidant autistic child is reduced to terms of neuronal motion, of synaptic plasticity and mindblindness and sensory disintegration and gut flora. There is something contrary here…

something neurologically askew.

If there is one takeaway from what I write here, it is this […] what we do not know, and what we often purposively ignore, are autistic narrations of such events – the interbodily potentials, desires, and moments that structure an autistic life

To whom do we listen? The autistic or the non-autistic? […] What of my unhuggable body? What of me? What of autos, the self that so consumes the presumably autistic? Where the fuck are we?

Melanie Yergeau

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Whose

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Parental poop talk is perhaps the most affectively loaded of all poop talk, in large part because it relates smearing, eating, and rectal digging in graphically humanizing terms. Someone has to clean it up. Someone has to act, to intervene.

The humanization in autism poop talk, of course, is rarely about the human whose poop has been thrust into the spotlight.

And, especially in the case of parent blogs and other digitally born life writing, poop talk is often divulged without the full and informed consent of the autistic person being depicted.

This isn’t to deny the dangers or stresses associated with a loved one’s ingestion of harmful bacteria, or the distress involved in attending to the spread of literal shit, or the community and support a parent might garner from sharing intimate stories online.

My point, rather, is that these narratives are shittier than the shit they claim to represent. These are shitty narratives – rhetorical commonplaces that author autistic people as victim-captives of a faulty neurology, as rhetorically degraded and rhetorically suspect.

In these constructions, our shit holds more rhetorical power than we do.

Melanie Yergeau

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The idea behind “behavior is communication” is a powerful one

It is the idea that disabled people – even severely disabled people without the ability to reliably communicate through language – have perspectives, thoughts, and desires all their own and have the right to have those around them understand and respect it.

The sentiment is that a person never does anything for “no reason” […] The sentiment is also that there is almost no case where someone has “no way” of communicating distress, discomfort, etc

I want to be perfectly clear: I completely support this sentiment. I agree with it entirely.

But, and here is where my issues with the phrase begin, sometimes behavior is not communication.

What it means is that not everything I do – or any other person with a disability does – centers around you and trying to impart information to you and trying to get you in particular to do something. And this one of my problems with the phrase “behavior is communication”: it is very self-centered.

By re-framing someone’s actions as “trying to communicate something to me,” you are basically writing their entire existence to center on you – your actions, your thoughts, your feelings.

And the fact is, someone else’s life does not center on you. It centers on them […]

ischemgeek

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Next (Part B)

Compliance

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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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Next (Part B)

Atmosphere – Rays (Part 3)

Previous

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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.

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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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