Truth Beacon – Research & Authority

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[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:

Truth Beacon – Advocacy

Truth Beacon – Experiences

Labels (Part 2)

Previous

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I have never heard either of these labels [high-functioning and low-functioning] deployed to mean anything but “still not quite, you know…one of us.”

That’s what “____-functioning” means.  “Not one of us.”

Dani Alexis

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In addition to being ableist and grading against a neurotypical standard (which is its own, major issue), functioning levels attempt to reduce all the complex information about a persons abilities and needs over time and across a variety of contexts down to one dimension. That’s always going to be inappropriate dimensionality reduction, simplifying what we know to the point that it’s useless. Talking about low, medium, or high support needs isn’t going to fix this problem. Neither will talking about low vs. high masking as if either of those means a single thing. Those still use a single dimension, and you can’t shove enough information about what those support needs actually are, or what the specific effects of masking are into a single dimension for it to ever work.

Alyssa Hillary

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For many of us, engaging with an amorphous diagnostic group-think entity is the first step towards getting a solid conceptual foothold in who we are […] It’s also a first step towards securing a place in society. Especially societies which have low tolerance for divergence […]

It’s a slippery slope, isn’t it? […] You want it, pursue it, and then can be used against you. But if you don’t have it, you run the risk of getting stamped on. […]

Ultimately, it’s really up to each of us, how we engage with our identities, how we understand ourselves. How we navigate our social worlds.

VisualVox

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Semantically speaking,
         autistics are outsiders by definition.

Because autism, basically, is defined by divergence.

Based on two articles by Caroline Narby

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Just because it’s not information you need, that doesn’t mean it’s a useless word.

Alyssa Hillary

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Labels are Tools – They can be used for good or bad things

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When labels become boxes, that’s bad. But sometimes labels are road maps. Guidebooks. They show you how to find the information you’ve needed but never knew how to find or even if it existed.

Jess Mahler

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Calling disabilities by their right names isn’t about labeling, it’s about breaking isolation and making important things speakable.

Ruti Regan

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[T]hey think the problem was that they treated their child like they were intellectually disabled, and they weren’t.

But that’s not the problem.

The problem is that they thought their child was intellectually disabled, and so they didn’t treat them like a person.

Julia Bascom

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It would be great if labels like autism weren’t necessary.

It would be great if ableism didn’t exist, but that’s one hell of a hypothetical.

Ableism is an extreme and far-reaching problem that can’t be solved without labeling the specific disabilities of the people being harmed.

In a world where most people speak with their mouths and assume everyone else does too, I need the autism label to explain why typing is better. In a world of sensory assault, where “I don’t want to” is not a sufficient excuse, I need the autism label to justify my self-protection.

Alix Ditto Au

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Yes, labels may bring prejudice and ignorance, but they can also bring understanding and much needed support.

Laura Rutherford

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Cure

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Main argument: Severely disabled

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I don’t hate myself, I just wish there was a cure so I could function better […]

Jonathan Mitchell

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[Some people] would not want a full cure but would take half of one, perhaps lowering the impact of certain symptoms while maintaining the core traits.

Creigh, Caley

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“But if you took away my autism, I wouldn’t be me!” neurodiversity proponents cheer.

“Yes, you would, and no, you wouldn’t. And that’s all okay,” I counter. Every human on this planet […] ha[s] no inherent, independent, unchangeable, enduring selfhood as such.

Twilah Hiari

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[E]very time I see a post about anti-cure or use of “autistic” and the r-slur as insults, there are inevitably a few autistic people commenting that they would actually want a cure, or that they’re okay with people using “autistic” as an insult.

In a vacuum, these sentiments are fine. You’re entitled to your own opinion, and if you are autistic both these matters are of direct concern to you […]

But we’re not in a vacuum.

We are surrounded by ableists. […] if you present an opinion that aligns with their beliefs and goes directly against the held beliefs of the majority, they’re going to tokenize you. Because one autistic voice that agrees with them is enough to undermine the voices of literally everyone else. […]

I’m not saying you should never express that you want a cure or that you think using autism as an insult is okay. […] But you need to be very careful why and how you express these opinions, because ableists will use your voice as justification to hurt people […]

Anna

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When we stop talking about ‘curing autism’ and start talking about ‘relieving autistic suffering’, the research takes on a whole new direction. When we stop using the cognitive shortcut ‘autism’ and start describing the exact problematic behaviors and traits that are experienced as a result of environmental, physiological, or social factors […] we may actually start having productive conversations about autism […]

VisualVox

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On the one hand, I read about how people need to find the positives in their conditions to help maintain self esteem and find a balance, and that makes sense.

On the other hand, I think that if we define the condition in terms of deficits, then the creativity and energy belong to the person, not the condition. And then, the reluctance to be free of the condition (assuming such a thing is possible) disappears.

Out of context, Sarah K Reece

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The truth is – if someone had offered me a ‘cure’ that would make me completely neurotypical in the first twenty three or so years of my life, I would have torn off their hand to get it.

That’s not an admission of defeat on the topic of neurodiversity, or a surrender to the idea that a ‘cure’ for autism is something that is wanted or needed. In fact, it’s one of the core reasons that I advocate so strongly against the very idea of finding a ‘cure’.

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These arguments [that support the choice of a cure] fail to address the fact that the issue here is not being autistic or being LGBTQIA+. The issue is ableism, homophobia, transphobia and all those ways that the world crushes down on you, repeating again and again that you are wrong, that you are defective, that the word was not built for you; a world that demands that you cut off your corners to fit through the hole, when the true answer was to widen the hole altogether.

Erin Ekins

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I’ve thought a lot about that mythical cure, and there have been days, many days, when I didn’t have to think at all – when I knew that, if I had a chance, I’d take a cure in a heartbeat.

I want the things a cure could give me. […]

Can you look at the list of things I want, and tell me if you see a pattern?

Every single one of those things I want?

Have nothing to do with being autistic.

In the end, there are really two things I want when I say I wish I wasn’t autistic or I want a cure. I want to not feel like a freak, and I want to feel safe. Those are hard, scary things to feel and to admit. And, because I’m being honest, I have to ask something even scarier.

What if being cured didn’t fix those things?

Julia Bascom

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We need to rally for mutual respect. We need to rally for diversity. We need to rally for healing. And yes, some of us choose to rally for cures and therapies and miracles. But I think that can be done in a way that isn’t going to hurt others. I think it can be done in a way that makes people look at us in awe and think, “Wow, now there is a group of people that can disagree without bullying one another.” […]

I choose not to say SUCK IT AUTISM on my blog anymore. I mean, I will say it sucks in my head every once in a while, because truth be told, it’s just how I feel sometimes; I don’t want to lie to you. It really is how I feel sometimes. Not every second, not every minute, not even every day. But I do think and feel it sometimes.

But I know now what that particular phrase is capable of and while it invigorated me when I used it the other day, it brought other people to tears when they heard it. And I’ll tell ya, nothing takes the wind out of my sails like realizing just how much damage something I write can cause. […]

Jo Ashline

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[…] And for that matter the whole cure topic gets oversimplified the same way.

While I strongly disagree with the notion of cure and all it represents, not all decent people have even heard of my point of view and not all decent people would agree with me once they did.

I have worked right alongside people who want cures (some of whom even did ‘biomed’), in order to fight for good adult services, against restraints and seclusion, against institutions in all their forms from huge to tiny and stereotypical to stealth, and a lot of other issues that we can agree on.

And I have met anti-cure people who are aspie supremacists, who do great harm to autistic people (especially those they perceive as inferior), and who I would rarely if ever find anything to agree with them on, not even the reasons for opposing cure.

Mel Baggs

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Basically, if there were to legitimately be no pressure to become neurotypical, if being autistic were actually OK, if it were a choice a person made for themself and only themself, with informed consent […] in that world? If it existed, and they chose it, I would shake their hands and wish them luck.

In the world we actually live in, I expect that the cure would be forcibly used on children, […] on anyone who receives services, and for any portions of the autistic community who technically were getting it only under informed consent, choosing not to would be used as a sign of incompetence, at which point it would be forced. That means any organization that states finding a cure as a mission is inherently not trusted.

Alyssa Hillary

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Unlike the porous and broad meaning of ‘disability’ – a word that has come to reflect the potential for community building and solidarity across difference in many disability communities – philosophical and medical framings of ‘severe disability’ presume undesirability, objective tragedy, and potentially a lack of personhood.

Sunaura Taylor

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