Comment by danShumway | Hacker News Reader

Comment by danShumway | Hacker News Reader

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> I have distaste for the author speaking on behalf of autistic people

The author's entire point, and the entire point of phrases like "nothing about us without us" is to get neurotypical people to stop talking on behalf of autistic people and to give them their own voices.

I think the author spends a lot of time pointing out that everyone in the autistic community is unique, and I think they spend a lot of time pointing out that even areas where there is broad consensus like identity-first language will still have some detractors among the community. I am unsure what else they could possibly do to make it more clear that the autistic community is not a monolith. They literally have a section titled "Key Takeaway: We Are Not a Monolith".

It feels like a really uncharitable/shallow reading to me to say that the author is pretending to represent anyone when they spend so much of their time going out of their way to specifically avoid causing that perception.

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> Also i have a distaste of the author listing their "disabilities" in their twitter bio.

Come on, people list far more trivial stuff in their Twitter bios than this. Sometimes it's nice to be able to find other people who are like you online, and self-labeling can help with that.

People being comfortable enough to talk about aspects of their identity in public is not something that's worth being mad about. And autism is 100% an aspect of people's identity, it's a really wild claim to say that a condition that affects people's brains basically from birth and for the entirety of their lives wouldn't be a part of their identity; your brain is a big part of what makes you you.

> I’m coming to you now as an ambassador of that culture

Then why did the author make this mistake? They are not my ambassador. I didn't vote for them. He shall stop talking on my behalf.

This arrogant form of patronizing should be called out, and this is what i just did.

Yup - they could have easily said “I am a single autistic voice offering my view. You should listen to more autistic people and fewer neurotypical people when trying to understand autism”.

They literally did say that!

> I really appreciate you taking the time to read this — but I am only one Autistic voice. What I hope you’ll walk away with is an understanding that every Autistic person you interview will give you a unique perspective into what Autism is, how it manifests and what kinds of challenges it’s associated with. Each of these perspectives is as valid as any other.

Yes, which would have stood well on its own, but was negated by “I’m coming to you now as an ambassador of that culture.”

If that single sentence was removed, would you still have a problem with the article?

I'm trying to understand how one sentence negates an entire article that says the opposite of that sentence. I can understand that sentence rubbing you the wrong way, but you do understand that regardless, the author isn't arguing for homogeneity?

We're discussing phrasing right now, and it's fine for a piece of phrasing to hit someone the wrong way or for it to get under their skin, that happens to me all the time. There's nothing wrong with getting hung up on an offhand comment or sentence that hits the wrong way. But it's important to understand that we are only talking about phrasing right now. The entire text of the article as a whole makes it abundantly clear that when the author uses the word "ambassador" they are not thinking of themselves as an anointed leader of a monolithic culture, they are using that word in a much looser sense to say, "I'm a member of this community asking for more representation from the community."

We're not really talking about the author's character or overall argument right now, because it's just not true that their argument is that they speak for all autistic people.

I do still have objections to the use of the phrase “Ambassador of that culture”. It comes way earlier in the document than the later qualification, and I am not of the view that the equivocation renders it moot. The entire piece is about taking care with how one communicates about autism, and who gets to represent it.

It’s not surprising that the way it does so is under scrutiny.

The word ambassador isn’t the only word in that phrase. The word ‘culture’ is also there. There is certainly an implication of two cultures in play.

The later part talks about a diversity of autistic voices of which the author is only one, but that doesn’t eliminate the ‘two cultures’ idea that has already been introduced.

The two cultures idea is definitely not universally held by autistic people. I suspect that this is at the root of a lot of the reactions.

Seriously? Read the very next sentence after that one:

> I’m not here to present you with an authoritative definition of Autism — I’m here to complicate your narratives in a way that makes room for me and people like me to finally be included in the conversation.

Pulling sentences out of context is not making your case. If you're going to call out people for being patronizing, then you need to understand that people are also going to call you out for misrepresenting the tone and substance of the article.

Here's what the author actually says:

> I really appreciate you taking the time to read this — but I am only one Autistic voice. What I hope you’ll walk away with is an understanding that every Autistic person you interview will give you a unique perspective into what Autism is, how it manifests and what kinds of challenges it’s associated with. Each of these perspectives is as valid as any other.

You are picking apart something to represent it in a way that is not backed up by the entirety of the text. The author spends a huge amount of time specifically calling out the thought process that says autistic people are a monolith. Using the word "ambassador" in one sentence does not change that fact, especially when the author immediately afterwards very clearly specifies what they mean by that phrasing.

Here’s a quote where the author clarifies what culture they are referring to:

“In the autistic twitter community where I and a lot of other advocates spend our time we are inclusive and speak frequently about ourselves as a culture -- not as a monolith, mind you, but as a culture. We disagree frequently about everything from IFL/PFL to whether or not Autism should be considered a disability, but we recognize that we're all Autistic and we're all doing our best to make the world a safer place for all of us.”

I don’t think it’s unreasonable for people to object to this Twitter culture being represented as some more general autistic culture.

I think it would have been vastly better if this sentence had been left out. Or, instead of saying “Ambassador of that culture”, they had qualified it and said “Ambassador of a Twitter autism advocacy community.”

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