Pardon The Dust

Welcome phrase in different languages. Word clouds concept.

Gosh, I have a lot I want to say right now, and I’m pretty sure that the process to get it all out is going to be a bit circular and meandering. Please hang in there with me.

I had a moment of panic on Friday morning. I talked to Shana DuBois, who was going to co-pilot this endeavor with me. I wanted to get a plan of action going. She told me she has another huge project taking most of her time and she can’t do this anymore. That’s fine (and I’m very happy for her), and her other project sounds completely wonderful, but I panicked. You see, I thought this would be a joint project, a huge, sprawling multi-facetted thing that someone would be able to help me out with. And then I learned I was alone. I had two choices. I could walk away from this, shrug, and pretend the idea never was dreamed up. Or I could stand proud, and give it my best effort. Basically, life is about rolling with the punches, so that’s what I decided to do.

You see, doing a website like this has been a dream of mine. Not having help is daunting, and I’m legitimately terrified, but I can’t walk away from something I’ve wanted so much, for so long.

Furthermore, events in the genre have pushed me toward launching the website a bit sooner than I otherwise expected. First, the closure of a few big websites has made me realize there is a vacuum, and nature abhors a vacuum so I am trying to fill it a little bit. Secondly, SF Signal has closed, and while they have found a way to keep their archives online, I would prefer to take the content I had over there, and move it somewhere that I can control it, just in case. The future is uncertain, and all that. So the goal as of right now is to post some of my favorite disabilities-related columns from SF Signal, while I work on getting new content and ironing out some of the kinks on this website.

Please pardon my dust.

Now, a little background, foreground, and details. First, some background, and a little about the things that have inspired me to start this journey to highlight the importance of disabilities in the genre.

The real inspiration behind this website is my brother, Rob. Rob is somewhere about sixteen years older than me, and age gaps like that have their own issues, though we’ve always been close. He was born without a corpus callosum, he sits firmly in the autism spectrum, and has always had a passion for life and a vivid imagination. However, he has had a hard time relating to, or communicating with, people. He really got me into speculative fiction. In fact, if it wasn’t for my big brother thrusting The Wheel of Time in my face when I was in high school, I doubt I would have ever picked up fantasy or science fiction books.

It took very little time for me to realize that these books were more than just fun for Rob. They were an escape, a way for him to get out of his own head and body and experience something else. They were also a way for him to relate to someone else for a change. In some ways, book were a way for him to show me how he feels in some situations. Finally, some books made him feel empowered. It helped him to see people overcoming their limitations and doing something important in spite of the things that could easily have held them back. He got me into the genre, and he taught me how to see books through his eyes.

Time has passed, and we are both older now. Rob can’t read anymore, has daily seizures, and is relegated to a wheelchair. He still talks to me about the books he remembers. During one of our conversations he said, “I wish people would talk about how someone like me can be important in books too.” That comment really struck me, and that simple sentence is really how my focus on disabilities in the genre was born. I figured it was time that people talked about how someone like Rob can be important, too. There is all this conversation about diversity, but little more than crickets regarding disabilities in the genre (admittedly, that is changing for the better as diversity starts playing a larger role in the genre).

In the past few years my own health has deteriorated dramatically. Recently I’ve been diagnosed with Ehlers-Danlos Syndrome, Hypermobility Type, and multiple comorbidities. While the diagnoses answers many of the puzzles that have plagued my health for years, it doesn’t solve the problem. And half the problem is knowing that there is no solution to the riddle of my body. There is no pill or magic surgery, and I’m left with a deteriorating body, and all the uncertainty, increasing physical limitations, and emotional baggage that sort of knowledge leaves behind. I walk with a cane and the realization that a wheelchair is almost certainly in my near future. I wear braces and tape daily to keep my bits in place. I live life in a sort of terror not knowing when my next big dislocation will hit. I’m learning how to live a life where normal activities require massive amounts of planning, and by the time the planning is over, I might be too tired, or in too much pain, to do the thing I was planning to do in the first place.

Now the discussion of disabilities in the genre has turned from doing something for my brother, to (greedily) doing something for myself. I want to see myself in the books I read. I want to read about characters that face some of the same struggles I face. I also have (getting to be severe) mobility issues, and a lot of the struggles my brother, and some friends, have faced at conventions is suddenly personal. A lack of ramps at a convention isn’t an abstract idea that matters in a vague way anymore. It’s personal issue that really upsets me me. It’s different with personal experience to give me insight. I can’t physically walk up stairs these days, and suddenly I realize what it’s like to be relegated to the group of people who can’t go there (wherever “there” is) because we were forgotten. And it profoundly angers me that an entire group (and a large group) of people, and all of our various needs, desires, and abilities, and disabilities, are so easily forgotten, glossed over, or plain overlooked. (I’m saying all of this knowing I am only addressing a very small portion of the disabled community, and I’m not even doing that very well. We are a diverse group.)

But personal experience opens up a whole new world, and it’s a world that matters so much to me, and there is so much I need to learn, and I’m still learning about. In the process of educating myself, I realized that I have a voice. It might be a small voice, but it is still a voice, and if I can use it for the benefit of others, than I should. And that’s really where this whole thing came from, in a very boiled down, pastel sort of way.

So that’s really a brief (very brief) overview of my inspiration(s) for this project.

There are problems that the disabled community are facing, struggles we overcome, and battles we face, and these are discussions that I think we should be having. Our voices; our words should be heard. They deserve to be heard. The disabled community is huge and vibrant, lovely and full of passion, but we are also largely overlooked but for some attention here and there by some big names that shine some light on us. We are edged out of conversations, and almost forgotten when topics of diversity are brought up.

But damn it, we exist, and we shouldn’t be ignored, forgotten, or marginalized.

I want to change that. I wanted to start a website like this years ago, but honestly I was afraid (I’m still terrified and here I am actually doing it). Then things happened, and now I’m finally realizing a dream. Things are a bit different than they ever were on other sites. First, I want the spectrum of topics we cover to be a lot wider and more diverse than I could ever manage on a website that wasn’t my own, or completely focused on this topic. Secondly, I control this site, which is a huge deal. If something happens that makes me question my gut, I can follow my instinct, which was something I struggled with on other venues where there was a chain of command. Third, I have a network in place, of disabled individuals in the genre (all of whom have generously volunteered for the role) who will serve as a “jury” of sorts to help me out when I get content that raises red flags. These are people who know how to approach these sensitive issues involving disabilities in the genre, and are well versed in them and can help me make official decisions on whether to post/not post a certain article/interview/whatever. I think it is immensely important to have a network in place of people who know the ins and outs of this topic, for a website this important, and I’m glad they are all there and willing to be there when needed.

This website will be slow to start, mostly reposting old posts from SF Signal that I think deserve to be revived a bit, while I work on new content and cleaning up any issues that will inevitably arise with a new website (for example, I know I need to work a bit more on the accessibility settings and some current design features bug me). But I hope you guys will be patient with me while I hunt down new content, work on new ideas, and flex my wings a bit. I’m not a website designer. I’m learning as I go, and it’s something that I’ve been having a hard time working my mind around in some respects. I will try to rectify any issues that arise as I see them, and change things that need to be changed. But I am learning (I literally understood nothing about setting up a website before I started setting up this one), so please be understanding in that regard.

Furthermore, I need to figure out how my time is going to work now that I’m dividing it between Our Words and Bookworm Blues. In my heart, I know if this website gets big enough I’m completely and absolutely willing to dedicate 100% of my time in the genre to it, but I need to see how it will go. And until (if) I reach that point, I need to figure out how I can manage to keep content going on two sites, while also living life. So, there are things that are happening, and for a while, I’d expect maybe a post or two a week until I find my feet and go from there. Reposted content will have [REPOST] in the subject, and new content will just have a subject. I will index everything, and tag it all so it is easy to find.

Our Words is something I’m very excited about. This website is a dream of mine, and I sincerely hope I can get it to be what I envision in my mind. This place isn’t about me, and it’s not about my brother. This is about all of us. This is about everyone in the genre who is disabled. I want this website to grow from the seed it is today, into something amazing. I’d love it to feature essays, articles, interviews, reviews, and really whatever else. I want to start important conversations. I’m starting small, but I want this to be huge. I want this to be for all of us, by all of us, about all of us.

This is the genre, in our words.

So please join with me in this endeavor. If you want to write for this site, then click on the links above to see guidelines and how to submit content. If you just want to throw me some suggestions, please do so. I welcome insight as I iron out my kinks and fix the things that need to be fixed. Also, I do plan on getting a Twitter for this site eventually. (Wow, websites are beasts.)

And thanks for being patient with me while I experience a few growing pains.

Huge thanks to J.T. Evans, who not only donated a server to host this site, but also the .com, and all the other things that websites require that I fundamentally don’t understand. Without him, none of this (I mean NONE OF THIS) would be happening.

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5 thoughts on “Pardon The Dust

    1. I really hope I can get it to be where I want it to be. It will be a huge amount of work, but this issue is so important to me and I’m very, very glad that there have been people like you in the community who have received this website with enthusiasm and passion. It makes my efforts so much more fun, and worthwhile!

  1. Greetings!

    I saw your site linked on File770, and I decided to drop by. I’m a bit of a Hallmark cliché when it comes to being disabled. I used to be a doctor who specialized in genetic diseases in children, and then I blew out a disk in my lower back, had two neurosurgeries that went poorly, and now I’m dealing with chronic pain and the loss of my job, and I’m looking for a new niche. To make the whole thing seem even more unlikely, my partner is blind, so my entire life is one of those “stranger than fiction” stories right now.

    I also walk with a cane, but I’m hoping to avoid transitioning to a wheelchair. My back pain limits me to sitting/standing/walking for only about 3 hours a day. (I can go longer, but I’ll pay for it the next day, and there are some days where I really can’t get up at all except to eat or go to the bathroom.) I spend a lot of my time reading, although my reading pace is so glacial that I’ve never been able to stay in a book club for very long.

    Anyway, that’s me. I’ll probably be a “lurker” for a little while, but if I see an opportunity to contribute to the discussion, I’ll jump right in. Thanks for setting up the space!

    –Frank

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