New Poem and Notes: “The Pyromancer”

For those of you who missed it, Goblin Fruit ended 2014 in style by posting their last issue with one minute to go before the year ended.

It is a beautiful issue as usual; I particularly adore the poems from Rose Lemberg, Alena Sullivan, and Neile Graham, but everything is scrumptious.

And one of the poems is mine!

“The Pyromancer” was inspired by me watching 4th of July fireworks with my family at Boldt Castle in, oh, 2012? 2011? A while ago now. (We’re Canadian, but at that time we lived just next to the American border, and my mother’s side of the family is American.) The whole “lights of boats on the water” thing was a thing I didn’t have to make up; I’ve always loved the look of many small lights in darkness, whether that’s the stars, a bunch of tourist cruise boats, or even just the street lights and porch lights of nighttime suburbia. That was where the poem started. Any statements in the poem that may be construed as being about magic, perception, resilience, etc, came afterwards. 🙂

(“Turning to Stone“, published earlier this year, was conceived at the same time and on the same excursion. I was in a busy holiday city and had a bad meltdown… You win some, you lose some, I guess! And then you can write about both.)

Signal boost

Those of you who enjoyed Luna Lindsey’s “Meltdown in Freezer Three” might be interested in her Unlikely Interview here.

Autism News, 2014/12/24

Stuff about race and #freeneli:

Stuff involving the Vatican and Autism Speaks:

  • Pope Francis talked to a bunch of children/teens with autism and their families, in order to raise awareness about autism and autism stigmas within the Catholic Church
  • Unfortunately, Autism Speaks was also there.
  • Jess from A Diary of a Mom and M Kelter point out problems with Suzanne Wright’s Autism Speaks speech at the Vatican
  • John Elder Robinson also gives a measured and constructive critique of Autism Speaks’ latest Twitter campaign, #MSSNG.

Misc:

Sad Things:

  • Lisa D. on what it’s like to maintain an autism memorial
  • Amanda Forest Vivian on autistic people abusing other autistic people
  • Samantha Crane on how ASAN got directly involved in the Issy Stapleton case (This is happy, but the Issy Stapleton case is sad.)
  • Carly Fleischmann, an autistic teenager famous for learning to type while nonverbal, posted to Facebook and Twitter early this month saying “needdc fdocttor helphgfi”. Her father posted an hour later saying everything was fine. The autism community in general is not sure what’s going on.

2014 in review

All the cool kids seem to be making year-in-review posts right about now.

I guess that means it’s time for mine.

I am thinking about 2014. You may have noticed a relative dearth of posting in the second half of this year. I did not publish much, especially compared to the epic publishing year which was 2013. A lot of other stuff happened. A lot of things changed in my life this year, some good, some stressful, many both. I appeared at a convention as a panelist for the first time, which was really wonderful. I learned a lot. I did interesting research at school. I picked up a really addictive LARP habit and made wonderful, geeky LARP friends. I let go of some personal connections that had been hurting me for a long time, began to repair holes in others, and learned to embrace some new ones.

And then.

Some of you know that I have been on a low dose of an atypical antipsychotic since I was 14. I was not psychotic when I was 14, but someone with a degree in psychiatry decided this was a good idea anyway. I know there is a lot of controversy about antipsychotics and other drugs as a remedy for autism symptoms. I don’t want to rehash that controversy here. Let’s just say I’ve been on the drugs for a long time and felt ambivalent about them for a long time. I’d talked to doctors before about methods of being weaned off of them (there was a brief false alarm several years ago when we thought I would have to do this under supervision for physical reasons) and had successfully reduced my own dosage in the past without large problems.

So, in June this year, I did one of the stupidest things I have ever done. Without informing a doctor, I tried to go off of them entirely.

Advice to everyone who is reading: DO NOT DO THIS. DO NOT. FUCKING. DO. THIS. Not even if you truly believe that you shouldn’t be on them, and are being “careful” and “intelligent” and weaning yourself off of them slowly in the way that the doctors have always recommended. I do not have enough caps lock to express this. DON’T. Antipsychotic withdrawal is horrifying. It can be worse than the thing they originally put you on the medicine for. This is well-documented.

I was psychotic for about a week before I figured out what was going on, had a headdesk of truly violent proportions, went back on the medicine, and called a doctor.

I do not say this in order to worry anybody or elicit pity or plead for help. This was June. It is December now. I am more or less okay and am caring for myself, and I have been more or less okay for quite some time. I have good health insurance (remember this is Canada) and a very friendly health team at school who are quietly and unobtrusively making sure that I continue to be okay.

I was psychotic for only a week, but it took me two months to feel like I was back in something resembling my usual brain, and three before I could get anything even remotely useful out of it. If not for my partner’s assistance and the support of my amazing supervisors at school during that time, I do not know where I would be.

This blog is supposed to be about writing, but for some reason, my writing is that one last thing that’s still hurt, and still refusing to be the way it was. I am getting a little bit out of it, but only very intermittently, and for a thing that I loved and defined myself by less than a year ago, it is confusing to see it become so elusive and difficult.

(Though I finally did finish the novel draft that I ought to have finished a year ago. I probably have another year’s worth of editing and research to do before I can even consider doing anything with it, but it’s there.)

And that was my year, and that was why most of you haven’t seen much of me. Also it’s why I may not be doing a list of my work, or of what I thought were the best works from other people this year, in the usual manner. I will probably be making some form of list but it will be perfunctory at best. I feel that I aged a year, but lived only half of one. I definitely was not keeping up with things professionally and I have officially released myself from any feeling of obligation to do so.

I am not completely sure why I am posting this, except that it happened, and it had an impact on things that the people who read this care about, and I am not sure what is the point, exactly, of keeping it a secret any longer. Stigma? But this blog is all about mental ableism anyway. I know that there exist things in the world that are too dangerous or personal to talk about for whatever reason, and that the decision of what goes and doesn’t go on that list is an extremely personal one. But for me, at this stage, I really don’t feel that this is one of those things.

And if I wanted to talk all about my autism, but failed to admit to this, what a hypocrite I would be!

I love all of you who have continued reading even while I wasn’t really here, and I am full of hope for 2015. Thank you for your support.

Tests and some rambling about tests

The other day on Twitter, Bogi Takács said:

the @bogiperson test of non-tokenized QUILTBAG representation: more than one QUILTBAG character. um that’s it?

Which of course got me thinking of Bechdel variants of all sorts. I actually went in and counted up the number of autistic books/stories that passed an autism version of the Bechdel test.

If you go with the simplest version – more than one autistic character, full stop – then a bunch of good stuff by autistic people passes but some of it doesn’t, and “The House of Idiot Children” passes even though it’s about as horrible as you would think from the title, because the story is set in a special school for autistic children and there happens to be more than one autistic child there.

If you start adding more criteria – more than one autistic character and both of them talk to each other – then everything actually gets even more problematic because:

  1. Both of Meda Kahn’s amazing short stories fail this version of the test, even though both of them show awareness of a multiplicity of autistic people and an autistic community, but people in the community who are not the protagonist don’t actually end up getting speaking roles, and any test that Meda Kahn keeps failing at is clearly the wrong test
  2. How exactly do we define “talking” here? Typing something meaningful is “talking”, right? Sign language is “talking”, right? AAC in general is talking and behaviour is communication RIGHT YOU GUYS? *stares meaningfully*
  3. No, actually, I take back 2 because with a disability defined at least partly by communication difficulties THERE IS NO NON-PROBLEMATIC WAY TO INTERPRET THIS RULE. Really. No. Back away slowly, please.

(Also: You know what definitely does pass an autistic Bechdel? The Big Bang Theory. But only because I read Amy as autistic and I am constantly confused and frustrated at how nobody else appears to read her this way. I mean GUYS, everyone on that show is ridiculous and offensive anyway but in my opinion, Amy is actually a slightly MORE realistic ridiculous depiction of an autistic person than Sheldon. She tries very hard to be socially acceptable to the normal people and just can’t quite get it, but she is completely on Sheldon’s wavelength and knows exactly how to deal with him, even though he treats her like crap. Seriously. I hardly even watch this show anymore and this still bugs me.)

So.

Maybe we need an autistic Mako Mori test instead. This accords a lot more strongly with my general intuitions about which stories suck and which ones don’t. But then, that’s me.

(And oh hey it turns out there are actually even more feminism tests besides these two, although it looks like many of them are specific to the issue of sexism and wouldn’t translate well to judging ableism without a LOT of adjustment.)

I wonder how many autistic people, in real life, have talked to other autistic people? I have heard people saying that they are surrounded by the autistic community, that autistic people are their family and their peeps, etc, that they feel close to other autistic people even when meeting them for the first time and separated by what NTs would classify as a large difference in functioning or other symptoms. I have also heard people saying the opposite, or saying that they simply haven’t ever had the opportunity to meet other autistic people in the first place.

I keep running into autistic people these days (gee, I wonder why? *stares at blog which is all about autism*) and that’s cool and all and I like them, but there was a time earlier in my life when I didn’t know anyone autistic outside my family. I got put in a high school social skills group for a while but I had approximately zero interest in any of the other people there. I know it’s probably internalized ableism but I still kind of roll my eyes when I get emails about ASAN fundraising galas because, seriously, a gala? I think if I went to a gala for autistic people I would just stand in the corner awkwardly the way I do with everything else. I don’t think being around other autistic people would actually help all that much for that purpose. But on the Internet, on my Internet turf… Well, that’s different.

Just because you share a diagnosis with someone doesn’t necessarily mean you’ll get along. Just because you have no autistic friends doesn’t mean your story as an autistic person isn’t worth telling. Being in the “autism community” (which is actually a lot of different communities if you look at it closely) doesn’t somehow make you more autistic.

By the same token, just because you have a diagnosis associated with social skills difficulties, that doesn’t necessarily mean you’ll be isolated or the only one, and I think NTs don’t realize how common it is for us to “get” each other and become strong friends.

It’s hard to get across this complexity in just one story.

I don’t know.

What do you think?

Autistic Book Party, Episode 15 and a half: Short Story Smorgasbord!

Adrienne J. Odasso, “Letters to Lost Friends & Imaginary Lovers” (Strong Verse, November 2012)

[Autistic author.] A poem. Not about autism, but about connections and the loss of the same. Given that we are so often accused of being unable to form or desire connections in the first place, this is important. It is also very pretty, and very sharp with its evocation of specific emotions. [Recommended]

*

Alex Dally MacFarlane, “Thin Slats of Metal, Painted” (Crossed Genres, Issue #1, January 2013)

Jess is a young girl with a strong interest in measuring things, who interacts with paintings as though they have feelings and agency. I read her as autistic, though I don’t know if that was the author’s intent. I’m not entirely happy with the way her imaginary life is handled, for reasons that are somewhat idiosyncratic to me and have very little to do with autism per se. But MacFarlane does an excellent job of showing that Jess is highly imaginative and empathic despite her solitary existence. As a result, the story rings true. [YMMV]

*

A.C. Buchanan (writing as Anna Caro), “Built in a Day” (Luna Station Quarterly Issue 013, 2013)

[Autistic author.] This story involves a strange planet, a time loop, and a person whose past and future selves work together to build a city but cannot directly interact. The ending has the protagonist learning to end her isolation, and I am conflicted about this: part of me wants to say, “Why can’t one of us stay alone and be happy that way, for once?” But even I do not really want to be alone forever, and there is nothing ableist or condescending about the way Caro drives the story to its conclusion. I think my discomfort here is a sign that the author is engaging effectively with themes that are highly emotional for many autistic people, including myself. This makes it, in turn, an important story. [Recommended]

*

Meda Kahn, “That’s Entertainment” (Strange Horizons, November 2014)

[Autistic author.] A story about disability being used as exploitative entertainment and exploitative entertainment being used as activism. This one didn’t drop-kick me in the feels quite as hard as “Difference of Opinion”, but it’s very smart, very on-point and very sad. [Recommended]

*

Luna Lindsey, “Meltdown in Freezer Three” (The Journal of Unlikely Entomology, December 2014)

[Autistic author.] Like Macfarlane’s story, but to an even greater extent, “Meltdown” deals with the persistent animism experienced by some autistic people. Unfortunately the whole thing is a little too cartoony for my tastes, and the plot doesn’t entirely hold together. (Why are a pair of small children suddenly trying to violently destroy an ice cream truck? Who is supervising all of these children? And where does Corrine get off saying she “doesn’t believe in magic” when there are already tiny “faeliens” living in one of her ice cream freezers?) Still, Lindsey gets props for writing a protagonist who is more visibly developmentally disabled than most, and for an ending which validates Corinne’s atypical thinking style as few endings can. [YMMV+]

A tiny poem

Niteblade #30 is now out, and with it, my tiny poem “Abominable Snowman“. (Yes, the lines visible after that link are the whole poem – though with Niteblade that’s generally not the case.)

If you go here you can see Alexa Seidel, Niteblade’s poetry editor, saying some very kind things about the poem (and about my poem “The Mermaid at Sea World”, which was published in Niteblade earlier in the year).

Though I do have a small correction – “Abominable Snowman” isn’t a haiku. The number of syllables is wrong, and some other stuff (if you are a Japanese haiku traditionalist) is also wrong. It is merely a tiny three-line poem, but I am okay with that. 🙂

Please do check out the rest of the issue as well.

Autism News, 2014/11/01

Stuff about the theory of disability activism:

Shared experiences:

Pan-disability stuff:

Misc:

Finally, we have Sad Things, Special Kelli Stapleton Edition because apparently this topic simply will not stay out of the news:

  • If you are new here and need a recap, Kelli Stapleton is one of many parents who have tried to murder their autistic children. Her daughter, Issy, survived the attempt. Her case is getting more media attention than most because she was a popular “autism parent” blogger before this occurred. Recently it was back in the media because the case went to trial and she was found guilty of first-degree child abuse.
  • Kelli Stapleton appeared on the Dr. Phil show. Many autistic people felt that Dr. Phil’s coverage was much too sympathetic, or that it shouldn’t have happened at all. (ASAN statement)
  • Other ASAN statement on the case
  • Also some people were making blog posts saying that anyone could snap and try to kill their autistic children if they were under enough stress. In response there was an #IAmNotKelliStapleton flash blog.
  • There were some good posts that I’ve decided not to link to because I’m really tired of this topic, including posts very strongly making the points that have already been made in other posts about Kelli Stapleton I have linked to, and posts by mentally ill mothers who had far fewer resources and supports than Kelli Stapleton did and still never considered harming their children. However, I will link to a couple of other posts that showed up in the flash blog:
  • Anonymous poster makes important points about how media attention & excuses for KS encourage other abusive parents (TW physical abuse)
  • Anonymous poster turns “I am autism” rhetoric back around on itself
  • Also, if you are not convinced yet of how damaging ABA therapy can be, even without aversives (Issy was in an intensive ABA program for most of her life), ischemgeek has the most harrowing post on the topic I have yet seen

More on Kea’s Flight

Here’s an interview with Erika Hammerschmidt about the book:

http://marshaamoore.blogspot.ca/2011/05/coauthors-erika-hammerschmidt-john-c.html

Choice excerpts:

The patronizing speech of Kea’s teachers— its sweet droning sound, the over-use of phrases like “good choice” and “poor choice,” the predominance of the phrase “you need to” as a command— is straight from my real junior-high special-ed experience.

They spent the entire critique session telling me that my experience from junior high school could never have happened. That was when I learned that there is a certain divide in literature between realism and believability.

Autistic Book Party, Episode 15: Kea’s Flight

(Pay no attention to the five-and-a-half-month hiatus between Book Party posts. We have had some technical brain difficulties but there is TOTALLY still a Book Party going on in here.)

Today’s Book: “Kea’s Flight” by Erika Hammerschmidt and John C. Ricker

The Plot: On a future, theocratic Earth, abortion is banned, but nobody wants disabled children – so the unwanted embryos are sent away to be raised in exile on spaceships. As the disabled children grow up, they band together to take control of their own fates.

Autistic Character(s): Karen Irene “Kea” Anderson, the book’s protagonist; Zachary “Draz” Drazil, her best friend and love interest; and a variety of other minor characters. Many characters are non-neurotypical in other ways as well.

So, after “This Alien Shore“, I was intensely curious to see what an autistic author’s vision of a non-neurotypical society would be. So I snapped up Hammerschmidt and Ricker’s book, which does exactly that.

One thing that’s clear right away: “Kea’s Flight” is a dystopia. The disabled children, or “rems”, on the Flying Dustbin – as Kea’s spaceship is informally named – are allowed very little in the way of autonomy or self-determination. Instead, they are cared for by robots and NT workers, who govern everything according to arbitrary, oversimplified, and totalitarian rules. Any questioning of the rules, pointing out inconsistencies in the rules, or reporting of the multiple harms done by their oversimplified nature is met with a condescending lecture at best, or with removal to an isolation room. No distinction is made between critical thought and active disobedience, and no disobedience is permitted.

To people who were raised with certain forms of disability interventions, this will all be very familiar. Indeed, parts of the book may be emotionally difficult to read.

Friedman, in “This Alien Shore”, assumes that non-neurotypical people somehow built a society to their liking, and hand-waves the details. In contrast, Hammerschmidt and Ricker dive right into the oppression and neglect that they know about, and extrapolate it into the future.

Fortunately, Kea is a plucky protagonist who grabs on to agency in any way she can. Early in the book, she devises a secret way of communicating with her friends. And as more friends and co-conspirators are added to Kea’s circle, they quickly find themselves embroiled in issues affecting the whole ship – including mysterious hackers, malfunctions, and eventually questions about the destiny of the Dustbin itself.

The non-neurotypical characters are well-drawn, with an appealing variety of talents, personalities, and challenges. It’s pleasant to watch them working together, complementing each other’s strengths, and compensating for each other’s weaknesses. (There’s also some reasonably good intersectional content; in particular, the characters turn out to be of a variety of sexual orientations, including asexuality.) Some of the NT characters come off as shallower, and I could have done without some of the scenes from the main villain’s point of view, but that’s rightly not where the book puts its focus. And while the plot occasionally wavers, it builds to a genuinely exciting finish.

There are also one or two interesting, neurodiversity-related flaws here – or at least, traits that come off as flaws at first glance.

First, there is the issue of didacticism. A number of reviewers on Amazon mention that the book seems to lecture the reader at times, or to be preachy. What’s really going on here is that Hammerschmidt and Ricker’s characters are eager to share information and opinions on whatever interests them – including autism, and the value of autistic people’s lives. For characters raised in a place like the Flying Dustbin, all such opinions are hard-won and exciting.

At first the frequent discussions of autism, language, and other topics feels like infodumping. Gradually, though, one learns that it’s really much more than that. Sharing information is not a “dump”, but a meaningful activity; it’s how the characters communicate, how they bond, even how they soothe themselves at tense moments. It makes perfect sense for a book full of autistic people to contain such information. So if any reader feels preached at or confused by digressions, I would strongly advise them to stick with the book anyway, and to see what they can learn.

The second, more serious issue is inconsistency with regards to – and I wish I had a better word for this – functioning levels. Hammerschmidt’s characters can all speak aloud (even though one of them frequently forgets certain words) and perform the activities of daily living without assistance. Kea notes several times  that not all the people on the Flying Dustbin can do these things – but she never quite takes the next step into introducing these more-impaired people as characters in any meaningful way, or exploring what their lives are like, or whether it would be worth inviting some of them into her circle of friends. According to the narration, some of the more-impaired people are still frozen as embryos, to be raised when the Dustbin reaches its destination – but others are already alive and exist in the same space as Kea, and are ignored.

Kea and her friends seem to only intermittently remember that these people exist. At one cringe-inducing moment, one of Kea’s friends describes her as “the most autistic geek of all the rems on this ship – besides Draz, and maybe some of the embryos that are still frozen”. Yet only a few paragraphs later, she says, “I’m not severe autism, just Asperger’s.” Huh?!

Later – at the end of the story, when Kea’s friends have taken over the ship – they discuss how to care for their more severely disabled shipmates. Some good ideas are raised – but the idea of ASKING those shipmates about their needs, or of involving them in the decision-making process at all, is somehow not one of them.

I wish I could say this was a small flaw. It is not. It is a very big flaw. If you’re trying to do disability rights, that needs to mean rights for ALL of us – not just the shiny Aspies. (And I say that as a pretty stereotypically shiny Aspie myself!) And in a setting like the Flying Dustbin – in which the whole point is that all sorts of developmentally disabled people are together, and that they’re together precisely because the NTs on Earth didn’t want them – that goes, like, quintuple.

(And then I start to wonder how the story would have gone if it had been written by Meda Kahn…)

(But, then, we can’t all be Meda.)

Still, when talking about herself and her own experiences, Kea’s observations are often poignant and insightful:

Their rationale for treating us like children was that we acted like children. Of course we did— what choice did we have? Were there any responsible, adult activities to do in this garbage can? Go to work and pay bills? Not applicable. Care for those younger than us? There weren’t any. Marriage and sex? Forbidden. We acted like children because we were treated like children. We acted like children because the role of children was the only role available to us.

And when it comes to putting all sorts of disabled people together and centering their everyday experience, Hammerschmidt and Ricker are the first SF authors I’ve come across who even tried. That’s valuable, and much of the way in which they do it is valuable, even if there is a big, problematic hole in the middle.

Furthermore, by the standards I usually use in reviewing these books, “Kea’s Flight” passes handily. There are autistic characters. They get stuff to do. They’re treated as real people, portrayed with nuance and sensitivity, not reduced to their differences or comically exaggerated. They get to be protagonists, they talk to each other, they form strong and devoted friendships, and in the end they work together to save the day. This is good and worthy stuff, and it’s good stuff that comes authentically out of real-life neurodivergent experience.

So, yeah, in spite of everything, I’m gonna say “go read it”.

The Verdict: Recommended

For a list of other past/future/possible Autistic Book Party books, or to recommend a new one, click here.