My Story Got Published!

So, obviously it’s been a while since I posted here (many ideas, few spoons, little time) but…

Look what came in the mail today!
(Image Description: Three images of the ZNB anthology Were-: one a selfie of me with a copy, one a stack of books, and one a picture of the first page of my story.)

My name! In print! On a page! I’m super excited, friends.

The trade paperback should be available September 15, and you can preorder it on Kindle now. It will also be available on Nook, Kobo, etc.

Also, check out ZNB’s new kickstarter:
https://www.kickstarter.com/projects/543968884/2059531899?token=017aef99

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A Very Exciting Announcement

I mentioned in my last post on here that I had an exciting announcement coming up. If you follow me on Twitter or Facebook you may already have heard this, as it was actually announced a few weeks ago, but if not, here it is:

This August, my first published short story will be appearing in the WERE- anthology which is being published by Zombies Need Brains.

You can read more about the anthology–and preorder it–here.

I’m really excited to read the other stories in this book, and for my own story to get out there. This story is everything I could have hoped for in my first published story. It has characters who are like me and it talks about things from my own experience, neither of which I saw a lot of in fantasy growing up. I put a lot of myself into this story, and I hope that means other people will see themselves in it too.

This is exactly the kind of writing I want to be doing.

I Have No Pain Scale and Everything Hurts: Communicating Chronic Pain

Hello people of the internet! It’s been a while. I have had a lot of personal stuff happening over the last six months or so, as well as some (very exciting) professional things which I’m not ready to announce yet.

One more order of business before I move on with the post: I’m trying to learn how to use alt-text and image descriptions so that they’ll work in the most accessible way possible. If I’ve screwed something up you would be doing me a massive favor by letting me know.

I’ve recently started using tumblr again. The plan was to stay very low profile and only post about fandom and cute animals and sometimes personal stuff. This plan has been something of a failure so far, partly because much of the advocacy and activism in which I’m involved is personal, and partly because I’m just not that all that great at keeping a low profile (and I have a pretty low threshold for what I consider “low profile”).

Anyway, today I came across a pain chart that someone had posted. Here it is:

A pain chart which includes descriptions of experiences. Text says: 0, no pain, "I have no pain", followed by 1, minimal "my pain is hardly noticeable", 2, mild, "I have a low level of pain. I am aware of my pain only when I pay attention to it," 3, uncomfortable, "my pain bothers me but I can ignore it most of the time," 4, moderate, "I am constantly aware of my pain but I can continue most activities,", 5, distracting, "I think about my pain most of the time. I cannot do some of the activities I need to do each day because of my pain,", 6, distressing, "I think about my pain all of the time. I give up many activities because of my pain,", 7, unmanageable, "I am in pain all the time. It keeps me from doing most activities,", 8, intense, "my pain is so severe that it is hard to think of anything else. Talking and listening are difficult,", 9, severe, "My pain is all I can think about. I can barely talk or move because of the pain," and 10, unable to move, "I am in bed and can't move due to my pain. I need someone to take me to the emergency room to get help for my pain.
The lovely colorful version of this pain scale was created by tumblr user doodleloser, who seems to be a spoonie themselves.

Now, I really like this chart. I will probably print out a copy and bring it with me to doctors appointments. All that being said: There are still some pretty big flaws in this chart re: chronic pain.

(Obligatory disclaimer because this is the internet: chronic pain is not the same for everyone and my experiences and those of someone else with chronic pain won’t necessarily match up. There are obviously some people with chronic pain who found this chart extremely helpful (and so did I, I just think there are other factors that are necessary for it to be useful.)

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Today is National Coming Out Day, and I Don’t Know What I’m Doing.

My post for National Coming Out Day: I reflect on coming out, evolving identity, and how being a dragon would make everything way easier.

Disabled Dragon

So. It’s National Coming Out Day today.

Coming out is such a strange concept. I mean, when I was a kid, I thought it was something you do once–because that’s how a lot of media talks about it. But that’s not true. As a kid I experienced it not being true, I just assumed I was doing it wrong, or something.

I think I was about ten when I figured out I wasn’t straight. I told a couple of my friends. Most of them were okay with it. One of them told me she was the same, and the two of us did that weird “dating” thing that 10 year olds do when they aren’t really old enough to date, like, at all. I think we mainly just held hands in class, really.

I spent the next couple years trying to come out to various groups of people. I never…

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Revelation of the Self: Confronting the Internalized Ableism of my Identity

There are things I have learned about myself, recently. Things that have been true for a very long time, but which it took time for me to process as a part of my identity.

Why does it take so long for me to connect my reality with its implication?

Perhaps it is simply another way in which my brain gets stuck.

But I think there are two other reasons. Both are a kind of internalized prejudice.

One has to do with social norms, with stereotypes and stigmatization and fear and contempt. If these traits are part of my identity, then I am Like Them, and They Are Different and They are Bad and I am Not Like Them.

The other is an internalization of the refusal to respect marginalized people’s self-definition and self determination. If Those People cannot define themselves, and I cannot define myself, then I certainly cannot define myself as One of Them.

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An Update on Posting

I will not be resuming regular posting here. That doesn’t mean I’ll be abandoning this blog completely, just that I’ll only post when I have something I feel the need to say. What this means is that I’ll post things that I have no idea how to sell, things that I want to be available to anyone without requiring payment or subscription, things that I want to get out there as soon as possible, and things that…aren’t really much of anything, but are still something. Most of what I post here will be related to disability and/or neurodiversity. Other topics will probably include gender, sexuality, and privilege. I won’t be posting everything I write on those topics, though.

I may also take some of the threads I write on twitter and put them up here.

There’s a really simple reason for this:

I need money.

See, a very strange thing happened this summer, and it sort of came to a head around my 20th birthday. I became an adult.

That is, I began to perceive myself as an adult in a way that I didn’t before. I didn’t expect this. Birthdays don’t usually actually change anything, at least in my experience. But for whatever reason, this time there was a very definite change in how I saw myself, and that change seems mainly to involve that I am constantly thinking about money. How will I get money? Is it worth losing out on a day’s pay to go to a writing convention, given that the writing convention will help long term with my actual career? What happens if my family’s main source of income goes away? Will I be able to pay for my medication? How do I avoid becoming homeless? Will I die in a gutter?

That last one is a pretty big one.

And, okay, I thought about these things before, but they play a much bigger part in my decision making than they did before.

So I’ll continue posting on this blog, but not in the same way before, because my writing energy needs to be concentrated on writing pieces that I will hopefully eventually get paid for (rather than writing pieces that will help me build a sort of portfolio, but which I do not actually expect to get any money for.)

I have been tweeting regulary, though, so if you’re interested definitely go ahead and follow me over there. And I’ll hopefully be posting more to DisabledDragon, so again, you can follow me there as well.

Why I (Still) Boycott Autism Speaks

(Note: This is the commentary from the link to my “Why I Boycott Autism Speaks” post. Something about the format of my blog made it really hard for me to read, though, so (under the assumption that some other people would have difficulty reading it also) I decided to put it in its own post.)

Since I posted about why I #BoycottAutismSpeaks, they have posted a “call for unity”–another attempt to silence the voices of the Actually Autistic people they claim to want to help.

I want to make an addendum to this post, however, because I mention my experiences with meltdowns, and I don’t want anyone to take what I say about my meltdowns as evidence that being nonverbal is The Worst Thing Ever. Being nonverbal sucks for me, but its not because there’s something inherently wrong with being nonverbal, and it shouldn’t be taken as a commentary on the experience of other autistic people. It sucks for me because most of the time, I’m not nonverbal. Verbal and written communication are my main methods of communication, and so far I haven’t been able to substitute written communication during the periods in which I am nonverbal.

When I become nonverbal during a meltdown, it’s scary. All of a sudden I can’t communicate, and the people around me are getting increasingly frustrated by that fact. That’s what’s so hard: not being able to communicate.

Communication seems to be a big thing for Autism Speaks–they talk about how autistic people are cut off from their parents/the world, and it seems clear they consider being nonverbal to be a mark of being “low functioning.” But there are plenty of ways for people who are nonverbal to get their thoughts and feelings across, even if finding one that works can be a difficult process, and even if those ways aren’t foolproof. The thing is, communication isn’t a one-person process. In order for autistic people, nonverbal or not, to communicate, you have to actually listen to us.

And if Autism Speaks really wants to help Autistic People, they need to start doing just that.