ANNOUNCING: OwnVoice & OwnStory

Okay, wow. I’m really, really nervous about this post.

And it will be long (and personal), because I want to explain things as I go.

First of all, I made a huge mistake last week. Huge. I apologized, and I still feel terrible (I doubt I ever will feel anything but terrible about that) but I also realize that apologizing is only half of the story. A mistake is a learning experience, and I firmly believe that, when mistakes are made, steps must also be taken to make things right. After the whole thing happened, I seriously thought I’d never recover. I thought I could never show my face again because I was so ashamed and felt so horrible about what I’d thoughtlessly done. But then I started thinking and I quickly realized that I can’t walk away from this. My mistake was tragic and horrible, and I never meant to do anything to ever hurt anyone like I did, but it happened and I can either let it defeat me, or I can learn from it. Period.

The point is, I can’t walk away from this. I just can’t. I won’t ever forgive myself if I do. It means too much to me.

My brother was born with part of his brain missing, and is also on the spectrum. He’s the one who got me into speculative fiction. It was a way for him to escape himself, and also a way for him to share something with other people, and connect in a way that is really hard for him to accomplish otherwise. A few years ago he had a horrible seizure and almost died. He has permanent brain damage now, and can no longer read. He has memory problems, is paralyzed, and suffers from frequent seizures. Losing his ability to read and remember what he read has been really hard for him. We were talking once (he can’t read books anymore, but he loves to talk about them), and he said, “I really wish someone would talk about how people like me can be important in books too.” And from that sentence, Special Needs in Strange Worlds was born. I decided to do just that. I wanted to talk about how disabled people play important roles in speculative fiction books, and from what I saw, no one was talking about it. I wanted my brother, and people like him, to realize that they were (and are) important, despite being often overlooked in the genre (which was something I decided to try to fix in my own small way).

I was going to call my column Disabilities in the Genre (thinking of titles is not a skill of mine), but one of my other friends (also disabled) said that title was absolutely horrible, and very stale and asked to rework it. I told him to please do so, and he came up with Special Needs in Strange Worlds. I thought that was a hell of a lot better sounding than Disabilities in the Genre, so I grabbed it. My brother loved it. My friend loved it. I thought it was catchy, and I’ve kept it in homage of those two people all these years.

And then the purpose of my column took on a whole new light when I was diagnosed with Ehlers-Danlos Syndrome a year ago. Though I’ve suffered with this my whole life (and have the cane, splits, tape, and whatever else as lifelong companions due to it), my symptoms, struggles, and degeneration(s) finally have a name, and that made everything a lot more personal. That’s when I started getting ideas for changing my column a bit, for expanding it and making it something more. But I am only one (very busy) person, and time limitations and being only one person makes any sort of expansion hard.

Anyway…

This previous week has proved that that column is no more. It is time for it to graduate and turn into something else, and the process of transformation is going to bring it a new name.

Enter Shana DuBois.

I started talking to Shana DuBois on Saturday, and we were both absolutely shocked by how similar our visions are for this project. It took about 10 minutes for us to realize that what we want is too big for a weekly column hosted by another website. We also realized that, as far as we are aware, there is no website dedicated to discussing the intersection of the disabled and speculative fiction (wait, there is Disability in Kidlit, a site that has inspired us quite a bit). We plan to fix that.

OwnVoice (*Note: The name may change. Think of this as a working title, if you will.)  is going to be a brand new website run by Shana and myself dedicated to discussing disabilities in the genre. We want this to be a bit more personal, a lot more far reaching. We are specifically going to focus on personal essays discussing the experience of being disabled in the genre. I plan to keep discussions about books going, as well. Ultimately when we look at this topic, we realize that it is absolutely huge, and having a website dedicated to fully exploring it will allow us to post personal essays, discuss books, do interviews, eventually get regular contributors, and really dive into this topic, and expand in ways that we wouldn’t be able to otherwise.

I’m not ending Special Needs in Strange Worlds for any other reason than I feel like it is time to move on, to graduate and expand, to learn from my mistake and try to make something absolutely amazing happen for a community that means more to me than words will ever describe. And in truth, I’ve been wanting to do something like this for at least a year now, but its impossible to do alone. It’s too big.

There will be a few things that will be fundamentally different about this project, and these are things that I have learned from my mistake:

  1. We are working on getting together a “jury” of disabled individuals within the genre who will read each piece that will be submitted to OwnVoice and OwnStory (details to come). Each piece must pass a majority vote of the jury before it drops on the website. This should keep anything like what happened on SF Signal from happening again. Plus, checks and balances are always good.
  2. We will make sure that disabled people directly participate in our site and anthology. The purpose of this project is to give the disabled genre community a voice, and we plan to do exactly that. The goal is for this website to be a place for a community that is so often overlooked to be heard.
  3. I am talking to various web developers to get this site to be accessible, with audio files, and text options and other things of that nature.
  4. Shana and I are doing this together. Since Shana is a superhero (more about that later), I feel pretty good about that.

Secondly, Shana and I are working on an anthology, OwnStory (working title, it will probably change) to be a sort of companion to the website. This anthology will be full of personal essays, poetry, stories, and other goodies. I’m guessing this won’t drop until closer to the end of the year, but we are hoping to release it this year. It will be amazing. I cannot wait. More details on this later. We’re squaring away the website first.

Shana is absolutely amazing, and I kind of feel like we share some super cool mental symmetry. She’s the fresh air and fresh perspective I need, and (bonus) she’s not ashamed to have me work with her on this. She’s understanding, and has a diplomacy and perception that I often lack because I’m too close to a lot of this to see the full picture clearly. Shana is exactly what is needed. She’s… damn folks, she’s amazing. I told her last night that I feel like she’s some sort of superhero. If you don’t know her yet, I urge you to get to know her. You’ll see what I mean. She’s passionate, dedicated, and even handed.

Shana is going to take over a lot of the SF Signal stuff for now so I can focus on the website side of things, getting it all set up and ready to roll. Her goal is to fix the problems with SF Signal at their root. She’s working to get disabled contributors on the SF Signal staff. She’s getting together a series of personal essays to combat the damage done by the piece that I notoriously published and shouldn’t have (Sorry. Really, I’ll never say that enough.). I have a few pieces coming in for Special Needs in Strange Worlds that I had scheduled before the whole thing happened, so I will publish them as I promised, and then I will let that column fade away so we can work our transformation and expansion.

I am not leaving SF Signal for any other reason than both Shana and I think that a dedicated website will allow us to explore this complex topic more fully than a weekly column would. In fact, I hope SF Signal will still let me contribute book reviews/whatever on the occasion.

So that’s what we’re working on. There are so many details, and so much that we’re still ironing out and exploring, so expect updates as they come. I will post them here. I hope to get the website up and running soon-ish, but intricate things take time and we both want to make sure everything is absolutely 100% above board before anything launches. It’ll be a little wait, but I think the wait will be worth it.

Mostly, at this point in time, I felt that it was important for the community to know that something is happening, that we are working hard to repair the damage I ignorantly did. I think what will rise out of the ashes has the potential to be truly incredible. I am trying very hard to make things right, to learn from my mistake, and I’m so very glad that I have Shana beside me while I do that.

Also, get to know Shana. She’s a force of nature, folks.

(Note: My comments are moderated. I rarely check my website on weekends, and I work/have kids, so if you leave a comment and it’s stuck in moderation for an eternity, feel free to email me/poke me on Twitter or Facebook so I pay attention.)

6 thoughts on “ANNOUNCING: OwnVoice & OwnStory

  1. I love this. My son has a similar, but less severe, disorder as your brother (he has dysgenesis of the corpus callosum versus agenesis). Because of this your story and your brother’s inspiration for Special Needs in Strange Worlds has always touched me a bit more. I am really looking forward to seeing what your new project will bring.

  2. Congrats on the new stuff! I can’t wait and will follow where you lead. And, for the record, I’d suggest giving yourself a break. We are all human. We get busy. We mess up. Whatever. Things happen. From this mom of a disabled young adult, you have certainly been forgiven from the moment you asked. Heck, even before you asked! But, I also must say that I love seeing you model appropriate adult behavior in cyberspace. It’s a hard thing to find these days! 🙂

Leave a Reply

Your email address will not be published. Required fields are marked *

Please answer the following question so I know you aren\'t a bot. * Time limit is exhausted. Please reload CAPTCHA.