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Truth Beacon – Experiences

The scientific literature is accurate, as far it goes. Multiple sclerosis results in progressive disability (there are scales for measuring this) or loss of function (you don’t need scales for this). But science is empirical, confined to the observable sphere. Science doesn’t know what anything feels like, the nature of anything. […]

Out of context, Paraic O’Donnell

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disability is a complex identity {if it even is (considered as) one}, and disabled people are multifaceted non-monolithic human beings

Partial quote, Wendy Lu

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The moment you forget that you can make mistakes, you are able to do great harm to the people you base your ego on understanding. […]

Viewing yourself as Good With an entire category of people opens you up to massively egotistical mistakes that lead you down the road to outright physical and emotional abuse.

The best way to approach learning about cats is with a combination of respect and humility. Know that you’re going to mess up, but don’t focus on it so hard that you don’t even try. […]

Out of context, Mel Baggs

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Some of the better research I’ve been part of has given me space somewhere to share what I think and feel or how my experiences do or don’t fit. It also follows up in some way with the conclusions. There’s a relationship, a sense of reciprocity at least in the process even if we don’t agree at all about anything else. It doesn’t have to be participatory to be collaborative in that sense. Nor does participatory research bypass issues of exploitation or harm in and of itself. The nature of community is the diversity of perspectives and voice – it is rare to be able to accomodate each of them.

The other kinds of research (and I include interview here) feel exploitative. My experiences are collected as evidence of ideas I don’t agree with and contorted to fit arguments that don’t include me. Or they are simply inept, using my time to educate themselves on matters they haven’t bothered to read about.

Sarah K Reece

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It’s perfectly okay to cherry pick ideas and strategies from different – even conflicting – frameworks to create something individual and effective for yourself/selves.

The Dissociative Initiative

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[…] assume they are a person, and remember what you don’t know.

Julia Bascom

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In the same series:

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Truth Beacon – Advocacy

“Shut up and listen to marginalized people” isn’t quite the right rule […] We need to do better by each other, and start listening for real.

Ruti Regan

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[…] The whole thing is set up in a way where the only way to move forward is to find something to oppose and devour. There is never a point where the way you do things is good enough. You have to find more and more words and ideas to oppose. Words and ideas that mark who is in the know, and who is bad. These things constantly change.

[…]

Within this culture, you stop noticing your surroundings. Instead, you see a network of lines representing various power dynamics, bad words and ideas, good words and ideas, and the way this community responds to them. You stop being able to see that this is not the only way to respond to injustice.

Mel Baggs

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[It’s possible that one who] outwardly celebrates the diversity in labels, doesn’t necessarily celebrate the diversity of thought – not seeming to grasp that the two by necessity has to go together. A group of diverse people would take different routes to achieve a purpose. They would have different ideas on how to do it, when to do it.

potteresque-ire

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[…] Autonomy as a value of deliberative democracy is contested by non-disabled family members who advocate with their disabled family members in order to portray the interdependency of their interests. Charlie’s experience thus gives new meaning to the value of reciprocity in deliberative democratic theory, moving it away from mutual competence towards mutual dependence.

Stacy Clifford

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People everywhere, every day are trying to navigate {many} kinds of dilemmas, and {some of the time} are doing so in a culture that refuses to discuss {them}.

Partial quote, Sarah K Reece

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When new ideas emerge in society there is usually discussion about them. It’s a sound general principle –  the best way to evaluate new ideas is to explore them critically and freely.

{Plenty of} issues […] are of importance to society as a whole. […] Surely we can agree that {people, especially the referred groups} should have the right to discuss it?

This must be done in an atmosphere of mutual respect in which anyone is free to critically discuss anything they wish, using whatever (respectful) terminology they choose.

The underlying issues, {redefinitions, and introduction of new concepts} must be seen for what they are: nobody’s exclusive property.

Partial quote, Jonathan Best

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In the same series:

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Truth Beacon – Research & Authority

[N]o matter what you do in the disability community, you will ruffle feathers just because it’s such a huge community, and it’s heterogeneous. It’s full of very different opinions and backgrounds because disability affects everyone and anyone in any culture. So there’s gonna be, of course, dissent and disagreement.

Caitlin Wood

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[O]ne of the biggest dangers that the culture of the autistic community faces is the allure of a single story told from within.

chavisory

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To be an autistic in a minority culture is to realise that we are not all standing on the same ground when it comes to our experiences as autistics.

Dream Walden

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But autism researchers are not geologists, to paraphrase @aneeman. We’re not rocks. We talk back. If autism researchers don’t want to work with people, they should study something else.

Sara Luterman

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Both [the personal experience and the scientific literature] provide insights. But these insights are qualitatively different, and no universal standard sets one above the other.

William Mandy

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The four kingdoms [Illness, Identity, Injury, Insight] may not capture the entire universe of the autism spectrum, but they describe largely non-overlapping perspectives that now divide the world of autism.

Thomas Insel

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No one autism story takes every single perspective into account. […]

Many of the perspectives conflict […] and there are just so many that it’s nearly impossible to remember to include them all.

Stuart Duncan

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[T]here are, I think, many versions of disability pride

Susan Wendell

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We don’t all agree. You don’t have to agree with all of us. You can’t possibly agree with all of us anyway. A lot of times people embroiled in identity politics get really wrapped up in the idea that the oppressed person is always right about their oppression. That’s bullshit. We can be as wrong as anyone.

However, we have on average thought more deeply and for longer about our oppression than other people have, so you can benefit from our experience when dealing with the way your own oppression takes the same shape as ours.

You can learn a lot more about ableism by looking into what disabled people have already figured out about it

Mel Baggs

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…the erroneous presupposition that observation of human performance is an exact science, that performance is evidence of ability, or simply is ability.

Idea and keywords by C.F. Goodey

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[A]utism research […] a mix of insights and insults.

PredictionError

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In non-autism areas, poor quality research and its harms – its waste of resources, its misleading findings – are vigorously condemned. There is recognition that even the best existing research standards are flawed and need always to be improved.

But when it comes to autism, standards have instead been lowered or discarded to accommodate the extremely poor autism intervention literature.

Poor standards in intervention research are seen not as harmful and wasteful, which they are, but as what autistics need and deserve. Resources have poured not into improving these abysmal standards, but into making the very poor quality autism intervention literature more powerful and influential.

Michelle Dawson

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In the same series:

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Reverberations (Part 2)

The recent spike in diagnoses of autism […] has prompted some to suggest that it is an excuse for bad behavior or the latest clinical fad.

Amy Harmon

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[…] the stamp of medical authority.

Increasing numbers of children are given increasingly specific labels, ranging from psychiatric and neurological diagnoses such as Asperger’s and attention-deficit disorder to educational descriptors including ‘gifted’ and ‘learning disabled.’

Maia Szalavitz

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Today, autism has broadened into an almost catch-all social category. Anyone who is withdrawn or rigid or awkward might be suspected of being ‘on the spectrum.’

Caroline Narby

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Remotely diagnosing famous geeks has become a kind of hipster parlour game.

Steve Silberman

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Every generation has its defining psychiatric malady, confidently diagnosed from afar by armchair non-psychiatrists. In the fifties, all those gray-suited organization men were married to ‘frigid’ women. Until a few years ago, the country of self-obsessed boomers and reality-TV fame-seekers and vain politicians and bubble-riding Ponzi schemers made narcissistic personality disorder – diagnosis code 301.81 in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, fourth edition – the craziness of the moment. And who among us has not proudly copped to our own ‘OCD’ or ‘ADD,’ deemed a mercurial sibling ‘seriously bipolar,’ written off an erratic ex as ‘obviously borderline,’ or nodded as a laid-off friend pronounced his former boss a ‘textbook sociopath’? Lately, a new kind of head case stalks the land – staring past us, blurting gaucheries, droning on about the technical minutiae of his boring hobby. And we are ready with our DSM codes: 299.00 (autistic disorder) and 299.80 (Asperger’s disorder).

[…] Such elasticity is nowhere so relevant as at the fuzzy, ever-shifting threshold where clinical disorder shades into everyday eccentricity. The upper end of the spectrum is the liminal zone where Aspies, as people with Asperger’s call themselves, reside.

But this is not a story about Asperger’s, autism, or the spectrum […]

It is, instead, a story about ‘Asperger’s,’ ‘autism,’ and ‘the spectrum’ – our one-stop-shopping shorthand for the jerky husband, the socially inept plutocrat, the tactless boss, the child prodigy with no friends, the remorseless criminal. It’s about the words we deploy to describe some murky hybrid of egghead and aloof.

Benjamin Wallace

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While delving into discussions on neurodiversity, I came across fanciful lists of fictional characters headcanoned as autistic. Character X strives for justice: they are autistic. Character Y likes reading alone: they are autistic. Character Z is passionate and talkative: they are autistic. In fact, any character even slightly atypical/loner/enthusiastic is likely to be promptly declared as having autism. This is how I found out that the main characters in My Little Pony were autistic, because they all had significant interests and plenty to learn about friendship and social relationships. My god. Is autism supposed to be the sole reason people have any depth at all?

La Chouette

(translated by Axelle Ezhr)

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[I]t has become fashionable in some circles to describe the spectrum as the very womb of modernity.

[…]

The same rose-colored impulse has driven an Aspie wave of revisionist psychopathography, in which such diverse historical figures as Thomas Jefferson, Orson Welles, Charles Darwin, Albert Einstein, Isaac Newton, Andy Warhol, and Wolfgang Amadeus Mozart are supposed to have been residents of the spectrum.

The time-traveling diagnoses often feel like cloud-reading – the case for Darwin as Aspie, as set forth in Genius Genes: How Asperger Talents Changed the World, relies on diagnostic bullet points: his childhood as ‘something of a loner,’ his ‘obsession’ with nature, his routine of counting the laps of his nightly walks in later life.

Benjamin Wallace

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People write characters based on personal experience, stereotypes, and personal ideas of what seems interesting. Unless you are a hermit, you’ve met multiple autistic people. (You may have thought they were ‘quirky’ or ‘very introverted’ or ‘stereotypical engineers.’)

You’ve read or watched media with characters based off of autism stereotypes. They’re ‘geeky,’ ‘awkward,’ or ‘free-spirited.’ […]

Some of these characters are stated to be autistic. Other times the authors dodge the question to avoid needing to write a well-researched and responsible portrayal. Other times the writers wanted to write someone ‘quirky’ and didn’t realize that their idea of ‘quirky’ looks very autistic.

You can read or watch media with autistic or autistic-coded characters. You can meet autistic people whether you know they’re autistic or not. And when you write about interesting people, you’ll probably aim for writing people who are a little unusual. […]

Luna Rose

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Autistic Representation and Real-Life Consequences: An In-Depth Look

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When you are an unusual person, especially if you are disabled, people will often tell you that they “want to hear your story”.   

Often, it’s not really your story that they want to hear. Often they have a story in mind that they want, and they want it to come out of your mouth in order to validate their theories about people like you. […]

Ruti Regan

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Telling your story without being a self-narrating zoo exhibit

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