In which summer involves doing things

Many things. This post is going to mostly be updates about "I did X, Y, and Z" this summer.

I went to the Computers and Writing annual conference in May, as you might be able to guess from the fact that the last post on here is my notes for one of the sessions. While there, I participated in the digital rhetoric collaboratives wiki quest, and I was one of the winners from that. As such, I got a book! Yay, books! I also reviewed two sessions for the collaborative: D5: Disability and universal access, where I got to watch Sam Harvey be awesome about demolishing the nonsense that is most applications of theory of mind. I've written a little bit about turning the concept inside out, a while back, when I asked if Autistic people might spend more time and effort guessing the mental states of others than neurotypical people do, and Sam seemed to be focusing on the ways the concept and rhetoric around it get applied as an oppressive force. I also got to meet Dani, another autistic academic, who then proceeded to write about me as the "Friend." That was cool too.

The other session I reviewed was F8: Refashioning and reimagining community identities: Performance and online spaces. That was cool because both panelists were members of the communities they were doing research about, and they got to talk about issues related to that, plus they just had really interesting projects to talk about.

I also presented about plainer language in calls for participation as an important thing- the idea of nothing about us without us includes making it so we can understand the questions being asked and therefore know what even to contribute! And then I chaired a panel after that, which was cool. Back to back panels on the last day of the conference for the win!

Shortly thereafter, I went to the Society for Disability Studies (SDS) annual conference. I was on the Digital Access Facilitation Team (DAFT) which was fun and worthwhile but also exhausting. And, just like at Computers and Writing, I was on back to back panels on the last day of the conference (this time immediately followed by tweeting two panels in a row for DAFT.) Here, one panel was on my more scholarly stuff, wanting to create software based around treating disability related language issues as a translation problem rather than something that the disabled person is 100% responsible for "fixing." The other was more on the activisty side of my stuff, talking about some experiences with disclosure on a panel with a pile of other autistic people.

Also at the SDS conference, we got to see Autonomous Press launch. I was at the launch party reminding everyone ever that I did the cover art for Typed Words, Loud Voices. On that note, did I mention that I did said cover art? It's a good book. Since my birthday is coming up, I will say that people who want to do a thing for my birthday are more than welcome to go get a copy for themselves or to donate to a library that will put it on their shelves. Given the funding structure for the upcoming Spoon Knife anthology and my plans to submit to it, this is even a semi-directly self-interested idea for what you can do! (Yeah, if I get a piece into Spoon Knife, I get more for it if more people buy Typed Words. I have a vested interest in people getting it, beyond also honestly wanting more people to read it.)

I wrote an abstract and submitted a piece for the INSPIRe annual virtual conference, entitled "Democratizing Disability Innovation." I plan to edit that piece and send it... somewhere. Not sure where yet, but I think it's worth sending somewhere. I started working on my piece for Spoon Knife. I did some editing on my piece on the translation (or cognitive interpretation, since that's a word that some autistic people use for it when they get a handy dandy friend to do this translation and support for them, see Kassiane's piece,) in the hopes of getting it into a journal. I really need to transcript the presentations I gave at the conferences, but ugh auditory processing issues are a thing. Making transcripts of my own talks, even with good recordings, is not easy, and I suspect that I actually have meh recordings. Oh well, it needs done so I will get it done. And then I'll post about it when it happens, since I'm pretty sure this is where said transcripts are going. At the least, it's one of the places.

In the last few days, Kerima made an important post about appropriation and erasure in activism, with a good bit of the focus on two good friends of mine, Lydia and Kassiane, because they are Autistic people of color, Lydia genderqueer and Kassiane a woman. This is relevant to "what Alyssa did this summer" because Lydia and Kassiane are friends, but also because Kerima linked to a post of mine for documentation and explanation on one of the issues, which means "got linked in an important post" is a literal partial answer to the question.

X Years of Experience

As an Autistic adult, when I see a professional listing some large number of years experience working with autistic children (or working with children with autism, that bit of language worry isn't the one I'm talking about right now,) I get kinda nervous. I don't really want to use that professional.

I've done some thinking about why, and there's a few bits.

Bit the first: children.

Why children? Is this a hint that the person thinks of all autistic people as children, regardless of age? If it's that, run far and run fast. That's extremely unsafe, both because the way children are treated is messed up and because the idea that we're children forever is just factually inaccurate. Even if I were working with the same set of cognitive tools now as I was at 5 (I'm not,) the extra 16 years working with them makes a big difference.

And if it's not that, if it really is that they only worked with autistic children, why did they only work with autistic children? There are answers to this that are OK, psychologists specializing in children's issues having autistic children be a specific subset of children they work with a lot is a thing. But. There are also a lot of answers to this that are worrisome.

Like, "Autistic people who worked with this person as a kid ran as soon as they could." That's not a good sign. Or if the person actually really worked with parents, that's a worry- that's an issue Neurodivergent K ran into when she was trying to get services. Places said they only worked with parents.

And whatever the reason, if they only ever worked with autistic kids... they probably don't know enough about autistic adults to be much more help to me than someone who knows they're clueless about autism. They probably don't love hearing it, but it's true. Autistic children and autistic adults are not the same! We have different issues, have different goals, have different priorities.

Bit the next: working with autistic, as it tends to mean.

Unfortunately, we live in a world where "working with autistic people" tends to mean "teaching autistic people to look less autistic" or "teaching autistic people to be obedient." That actually applies for a lot of disabilities, it's just that autism is the one where I have the most opportunity to know it.

This is pretty directly opposed to what I actually need. Hiding my autistic traits takes energy I don't really have to spend, and spending lots of time and energy explaining why is only worth while if I'm actually going to get help of the sort I do need out of it.

Bit the last: experience.

Remember that the experience is in the things I just talked about. That means it's going to be experience in deciding what an autistic person needs for them, deciding how to accomplish that goal, and enforcing it, probably with a good bit of talking over the autistic person.

Do I really want someone with large X number of years experience talking over autistic people with the idea of making us act less autistic to be the one "helping" me deal with the mismatches between me and the neurotypical-dominated world?

One Reading Suggestion

I don't know how many of you actually read through that whole list of things I either cited or made notecards for about the erasure of queer autistic people, and that was so long ago that you probably wouldn't remember if you had... but there is one person where I cited seven of her articles. Those were part of a series called Double Rainbow, and I really, really suggest reading the series. For once, I'd even say read the comments- most of the commenters are Autistic people who get it, so far as I can tell. There are some exceptions, one of whom I cited as contributing to the erasure of Queer Autistic people, but mostly it was good.

Anyways. Heads up for a quote from that bad comment, because I'm handing over the notecard I got out of it.

Java Junkie claims that “Your critique of this fact makes me wonder if you realized you were reading a book about autism instead of gender identity.” despite the blog series being specifically devoted to the intersection of autism, gender, and sexuality, and argues that “Sexual identity is much to complex of an issue (ESPECIALLY for autistics) to address it more in depth than they did in a book that's meant as a general overview.” In doing so, she says that Queer Autistic people are too complex to address.

The fact in question is that parent guides were really bad on the subject of gender. They told parents to make their daughters do gender normative stuff. [Shaving legs and pits for girls was on this list.] Which, I understand that this is socially expected, and I can totally understand explaining to folks that it is (now try to explain why it's expected, good luck coming up with anything other than sexist nonsense because you can't.) What's not OK is making someone do it. We have the same right to knowingly go against norms everyone else does, even if/when a little extra checking in to make sure it's knowingly sounds like a good idea.

It's not that much more complex to say "Make sure kid understands what's expected and that if they don't do it some folks will use that as an excuse to be terrible, then let them chose." It's especially not that much more complex once you get into the question of "How would I make kid do the thing, anyways?" We think it's more complex because there's assumptions that "Tell kid what to do" and "Do socially expected things" are simpler, in this case the socially expected things being gender conformity, but... it's really not? The perceived simplicity is artificial, since attempting to keep up with gender norms is actually really complicated.

Anyways, assuming that "wants to write about a thing" leads to "actually writes about a thing" (meh, see the month long absence when I tried to convince myself the next thing I would write about would really be Li Jinsheng,) I will eventually talk about some other sources I cited in my paper that I think are good to read. Also, the paper is now a chapter in Criptiques. 

T-21 Blog Hop: Social Justice

IRONY UPDATE: One of the things that inspired this post was an Autism Speaks fail that I thought was over and taken care of. The day after writing this, I find out it's not actually over and that Autism Speaks are white-texting liars and also put the white-texted toolkit back up. Story here.

Today, I'm talking about a social justice issue that probably a lot of you don't think of as social justice or as related to disability. But it is. I'd describe it as "cite your sources," but it's not a full MLA or APA or Chicago citation that we necessarily need as a justice thing. Frankly, making my own citations of those kinds is a cognitive access issue for me, so I either use an automatic generator or get someone else to do my citations. But the idea of saying where you got the ideas you're using and building on? Yes, that is a social justice issue.

So. Here's the part where I talk about why.

Advocacy comes with innovation. People need to figure out what it is in their situation that needs to change, and they need to figure out how to change it. People are coming up with new ideas- that's what innovation is. When people neglect to list where they got these ideas from as they build on them, there's a few things that happen. (Links Democratizing Innovation and my post about the book, because relevant.)

First, people tend to forget where the ideas actually came from. When we're talking about technology stuff like in Democratizing Innovation, that means corporations don't know which customers came up with the ideas.

Then they forget that it even was customer who came up with the ideas. They think they came up with the ideas themselves.

Now the big group probably has control over the idea and thinks they came up with it, but they didn't!

This applies with advocacy things too, sending credit for ideas up the power gradient- how did Queer Rights stuff start up in the USA? It wasn't about marriage for people of the same gender. Trans women of color started that up, predominantly Black trans women. Today the face of this sort of advocacy is white gay men, and the T for trans that started this movement tend to get ignored. There are people in those movements who legitimately think it was white gay people who started it.

In disability stuff, parents of kids with disabilities generally have more power than people with disabilities do themselves. (Less so if the parents are also disabled, even less if they're openly so, and there are some organizations that make sure to give their power to Disabled people to try to combat this, but overwhelmingly it's parents who get listened to. Check the readership on blogs if you don't believe me.) Within disability, the image we have is usually a young white boy with whatever the disability in question is. Sometimes it's not, but that's the usual. A white man with the disability is probably going to get listened to more than someone who isn't a white man and has the same disability, or than someone who has multiple disabilities. There are a lot of power differentials. Access to academia is one of them.

When we fail to cite/link/acknowledge where our ideas are coming from, we wind up erasing our sources. This can cost them opportunities for authorship and scholarship and other things that can help with being not impoverished. Poverty is a big issue for marginalized groups, like, you know, people with disabilities. People also sometimes act like a group doesn't really exist, which can get into an ugly cycle with this: the idea can't have come from them because they don't exist, and we know they don't exist because they don't come up with ideas! So we ignore the ideas they came up with (or pretend they came from someone else), maybe we'll come up with the idea that they can't think. Wait, that's already a disability stereotype. It'll just get worse.

So yes, if you're building off an idea someone else wrote about, say so. Give enough information that people can find what the person wrote. Since this is the internet and most of us are bloggers reading other bloggers, link it! Links are good! They drive traffic to the people you linked, which is good for plenty of reasons, including social justice type reasons when you're linking disabled bloggers. Boosting the voices of people from the groups you want to help is a big part of how you do allyship.

Oh, and a note for the folks who think citations and copyright law and such are evil and bad: that's great, if you want to tell the world that they don't need to cite you go ahead and do that, but if you enforce that "no citations" rule on others, that's not OK. You might be couching it in the language of justice, but if you're erasing the marginalized folks who came up with these ideas, it's still helping oppressors. And yes, this applies to ethnographic stuff and sociological stuff, if you're talking to members of a marginalized group about their experiences and one of them tells you they don't want to be anonymous, you listen. Enforced anonymity erases scholars who are members of the groups being studied, and that's unacceptable. (Offering anonymity is still important- it's enforcing anonymity that's a problem.)

Also, creative commons is kinda cool and probably has a license that will keep some big corporation from taking your work and making it proprietary like happened to the work of a bunch of MIT coders and which still lets people use your work in the ways you want them to be able to use it.

This was for the Down Wit Dat T-21 Blog Hop.

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This is autism

I've actually talked about this sort of thing before. On Tumblr, I have a "This is what autism looks like" post from about a year and a half ago. I'll be reblogging myself to get it out there again. I've written some poems that are relevant, too. They're copied and pasted at the end of this.

Anyways.

What is autism?
It's always a person or a group of people. There is no autism detached from the person- there's no way to split off "this is the autism and this is the person." Any metaphor that tries is going to be a bad metaphor. So I'm not going to do that.
It's also probably a lot of different things, because seriously this isn't specific. There were a lot of ways to meet criteria in DSM-IV-TR. There were 3129 different ways before getting into single criteria that can be met in different ways and known traits that aren't on the DSM list.
Even when the core bits are the same, presentation isn't always going to be the same. It might not even be all that similar.
Autism is better understood as a foundation everything else gets built on (kind of like a neurotypical makeup is a foundation that a neurotypical person's mind/personality is getting built on) than as... probably most of the things I've seen it understood as. Environment and experiences and such are going to affect what happens from there, just like with neurotypical folks (and with allistic folk who aren't neurotypical.)
So what's autism?
It's all the A/autistic people and the people with autism and the undiagnosed who think they're just broken or wrong and the undiagnosed who've gotten along OK. It's all the people whose minds and thoughts and experiences are built and reacted to using an autistic foundation instead of one that's close enough to "average" or "normal" to get called neurotypical.
Autism is people. It's not an outside force stealing them away. It's people, right around 1% of people.

Now have the poems woot.

Anniversary

I stand in front of you.
I tell you exactly who I am.
I am a college student,
And I am Autistic.

And yet, and yet, and yet you assume,
I must be a parent,
I must be writing about my child,
An anniversary of diagnosis must be for my child.
No, it's for me.
An anniversary of diagnosis must bring back sadness.
No, it is a victory for understanding and hope.
An anniversary of diagnosis is a difficult day.
No, I want a cake. (Or ice cream. Ice cream is good.)
An anniversary of diagnosis is a day to reflect.
That much, at least, is true.
But what to reflect on, what to think?
Autism: 0, You: 1?
This is not zero-sum
Defeating autism?
We're not separate.
Remembering that my child (what child? I have no child yet) is still my child?
How could I forget that?
How could a different neurology cause anyone to forget that?


Autism Is

Autism is a word for the ways I will never, can never be normal.
It is also the word for "why this doesn't bother me."
Autism makes me a foreigner in my own country.
It also protects me from culture shock, as I am accustomed to being "other."
Autism makes it harder for me to find friends.
It also keeps false friends away.
Autism makes it harder to take notes in class.
It also means I don't need to.
Autism makes mint, strobes, sirens painful.
It also allows me to stim.
Autism makes oral speech less natural to me.
It also provides my abundance of words.
Autism means challenges.
It also means solutions, if only I am allowed to use them.

Asexuality and Disability for the Carnival of Aces

Like the title suggests, this is for the Carnival of Aces. Specifically, it's for the October edition, which I am hosting about disability and asexuality.

I'm Disabled. Specifically, I'm Autistic. I'm also somewhere asexual spectrum. As of right now, my best guess is that I'm biromantic and asexual. Sex drive? Not a thing. Wanting to have sex with someone? Not a thing. It's just not.

That said, no, not all disabled people are asexual. Not all autistic people are asexual. Not all asexual people are disabled. Things get ugly when people make any of those assumptions, often related to folks deciding that one of these identities causes the other and the one supposedly being caused is therefore not valid. I actually talked about something like that with autism and gender identity once, the point was pretty much that even if autism was causing autistic trans* people to be trans*, they're still trans* and people shouldn't be invalidating the trans* identity based on the person being autistic.

Well, the same thing goes with asexuality. Even if I were only asexual because of sensory issues (no, that's not the case, I'm just not interested. Really,) I'd still be asexual. Even if a person were only asexual because their hormones were a bit off what's "expected," if they're not experiencing sexual attraction and choosing to identify as asexual, they're still asexual. [My surprise level would be exactly zero if I found out my hormone levels were a bit weird. Seriously, I'm DFAB and a natural tenor second/baritone. But the thing that weird hormone levels can actually cause isn't the same thing as asexuality. It's decreased sex drive, which is different from lack of sexual attraction. I don't seem to have either of these things, but if I'm not going to have sexual attraction, I feel no particular need to get a sex drive, even if hormones could get me one.]

I think a lot (not all, but a lot) of the harm done by people assuming that asexuality is because of a disability is that people decide it's therefore somehow not valid or needs "fixing." Of course, disability is a natural part of the human experience and the assumption that it being related to a disability is why it needs fixing is an ableism thing. Being a sign of a disability shouldn't be why something needs fixing. Causing distress to the person who has it and them deciding they want to fix it should be why something needs fixing. Which, um, if you're identifying as asexual, the lack of sexual attraction is probably not the thing that's causing distress? Other people's reactions to it might be. That would make sense.

Other parts of the badness cause interference with self-understanding. It's hard to reach self-understanding when people are chucking lots of bad information at you and insisting it's good information. That's a problem that some autistic people have with therapists, actually. Sparrow talked about that in her book, where therapists would tell her how she was feeling based on her body language and she wouldn't be sure what she was actually feeling but their statement was wrong. They were working with the assumption of neurotypical body language appropriate to the part of the USA she was in at the time. Other cultural assumptions can get bad information passed about our asexuality, and all of the bad information makes self-understanding harder.

So there you have it. I have dumped thoughts about disability and asexuality into a post, and now it is a post. Cool.

Some Short Answers

Trigger Warning: References to erasure in 1st paragraph

Here. Have the rest of the stuff I wrote for that Gilman blogging thing.

This is for who I want to have dinner with, if I can choose anyone.

Every movement has members, often important ones, whose names we don't know and never will no. They've been forgotten, maybe because the person didn't speak to writers, maybe because writers were never interested in them, maybe because they were marginalized in multiple ways and therefore erased purposefully and their work credited to others. Maybe it's that they were locked away and their work found later, with no one to know who made it. I have no name for the person I want to have dinner with, because I want to have dinner with one of those people from one of the disability rights movements. I want to know the parts of my history that are forgotten or erased.'

This is what I want with me on a desert island.

 What I'd really want is food, water, and shelter since those are the basic needs that people have for survival. Assuming that food, water, and shelter are taken care of, maybe because I can find them on the island, I'd take a first aid kit. I'm clumsy, so I'm going to be getting minor injuries fairly often and a first aid kid is always helpful. Then I'd want a laptop with infinite battery so that I can write. My handwriting is horrible, and I want to be able to read what I wrote, so the laptop is the way to go. With current hard drive capacity, I think I could write for a lifetime without running out of space. For my third item, I want a good knife. With a good knife, I'd be able to make other things I want on any island that's able to support life. The things would be basic, but things like the ability to strip bark off a tree and make rope are highly useful.

 And this is the animal I would be for a day.

If I have access to mythological creatures, I'd take a griffin. They're smart/have longer memories, are unlikely to get eaten because they don't have any natural predators, and can FLY. Failing that, I'd take an eagle, since eagles are also top of the food chain and able to fly. Flight is the biggest thing that I'd want if I'm something else for a day. I think that's a common thing to want- if not, there would not have been so many people trying to create flying machines throughout history. I'd choose a flighted animal that is on top of the food chain because I don't want to get eaten that day. Survival is something I rate highly, after all, and getting eaten doesn't match well with survival. Memory is only an issue if I'm really becoming the animal instead of just shapeshifting- the logistics of me remembering what I want to do while I can fly gets more complicated if my brain is working like that of a sparrow.