Spoonie Writer: Coping With Reliance

SPOONIE WRITER: COPING WITH RELIANCE

There are two things that brought this piece to mind. One is the part of spoonie life when you're realising that you need to rely a lot on assistive technology. Whether that's a wheelchair, or walker, or using text to speech software so that you can keep writing. The other reason is the feeling of being unreliable when you're a spoonie, not just for personal things, but for the parts of being an author where you need to be doing something at some time, and your body just doesn't get with the program, and you end up having to cancel, or move the deadline.

Now both of these are more than okay. There's nothing wrong with needing help, and it's more than understandable for you to need flexibility as a writer because of you chronic illness. But that doesn't make either one any easier to cope with. I've been published for over fourteen years, and I still look back at the years I didn't write because of health issues, as a bit of 'wasted' time, even though, logically, I know that I couldn't have managed it then and needed that time to focus on other things, like getting my degree.

But yet the brain can be against you and the whole idea of needing to be productive to be valid is a hard battle to fight within yourself, and within the writing community. It's never, usually, framed in a bad light, people are never, usually, telling you that because you don't write this much, or because you need this or that, or because you weren't able to get to this thing, that you're not really a writer. But that doesn't stop the brain gremlins from speaking up and letting you know that's what they think.

I've been really lucky in my writing life that I've always had the support from my friends. I've always had people, even though at the beginning they weren't all writers, telling me that I was doing the best I could, and that was okay. But it took me a long time to be okay with the fact that I needed that reliance, that extra help, and also to be okay with the fact that to some people, I would always be 'unreliable' or 'unable to follow through'.

And for that I really don't have much advice, other than to remind yourself that it's okay to take your time, and it's okay if you need help, and it's okay if you have to re-schedule something because of your health being a pain in the butt. And it's also okay to not be productive. I spent NaNoWriMo last year going at double speed, and while I don't regret doing it, I am still paying for it now. It's something that I'm having to pull back on because I pushed myself so close to burnout. And for what? To prove to my brain gremlins that I was valid?

I AM valid! Just as any other writer is, any other author. You don't have to be madly productive to meet that limit of suddenly being valid, to somehow proving that you are doing this. You're doing what you have to do, to keep yourself healthy and the words coming, and if that takes you months and years, and takes someone else less time, that's not because you're doing it wrong. You are valid. As a writer, as an author, and as a person. End of story.

So I know this isn't the usual tone of my writing advice pieces, but I felt like it needed to be said. I'm struggling right now on a year of limited sleep and still no end in sight. I know that it's hard to get going, and I don't need brain gremlins trying to convince me that because I find it hard, I'm somehow doing it wrong.

So remember that, you're not doing it wrong. Keep going, keep writing, and keep knocking down those brain gremlins!

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5 Disability Tropes I Hate In Fiction [CC]

Telling you all about the five disability tropes I hate in fiction! #Authortube

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Disabled Characters FTW! - The Creative Process

DISABLED CHARACTERS FTW!

I talked last week about representation (found here) and this week I want to touch on something near and dear to my heart, and that is: disabled characters. Now I've talked about this before (pieces here and here, video here) but it's been a long while since I really spoke about this issue. A lot of the time, it feels like disabled characters get forgotten about. We end up with the tragic ending, or being cured when actually we're just happy being in fiction. There's a lot than goes into this, some of it is the belief that disabled people are better off dead, some of it is the idea that every single one of us just wants to be cured magically and go on our way, and some of it is plain old ignorance.

When I started my AuthorTube channel, I did so without really saying much about my own disability. If you follow me there, you know that I regularly open up the floor for questions from my readers, you guys basically. You'll also know that a lot of the time, I got a lot of similar questions: what's wrong with you? It got to the point where I did a whole video addressing that because I just got sick of being asked all the time. (For the curious, the video is here) But what does that have to do with disabled characters and why you should write them?

I'm glad you asked. It's as simple as this. A lot of the time, I'm seen as tragic and/or inspirational because I both write and exist while being chronically ill and in a wheelchair. A lot of the unsolicited messages I get are from people unaware of what my deal is, and therefore asking what's up with me and how does it get fixed. And there in lies the problem. You can't "fix" me. I am, firstly, not broken, and secondly, there is no known cure. And I'm okay with that. There are some days when I'm not, but for the most part, I am okay with the way my life is going. Because of getting sick, I was able to start my writing career and if that'd not happened, I wouldn't be where I am today. But before you start telling me how inspiring that is, read on a little further.

A lot of the time, when people like me are in stories, they're seen as a warning, or a tragic ending. People fawn over them, feel sorry for them, use them as a way to build themselves up and generally the disabled character isn't at all well-rounded, because they are, at the basic, a prop to spur on the protag and save the day. And that's a really hard pill to swallow as both someone who grew up chronically ill, and someone who writes young adult fiction. As I mentioned last week, I don't think abled people should be writing about the struggles of being disabled, but that doesn't mean we have no place in your story. It also doesn't mean that for a happy ending, the disabled person has to be cured or die so that they are "no longer suffering."

I say it like that but I know there are a wide array of views when it comes to both the disabled community and the chronically ill community, the crossover between the two is a lot and everyone is different. I am not, by any means, claiming to speak for anyone but myself. I'm not the voice piece and I am only going by my own feelings and thoughts when it comes to disabled characters in fiction that I've read or seen talked about.

So what are my tips when it comes to writing disabled characters and how can you avoid falling into a trope plot hole that makes it more cringey than readable? Glad you asked, because you know that I love to give out tips on these posts so here's my top five when it comes to writing disabled characters.

#1 - NO INSPIRATION PORN
If you're not disabled, then you've probably never heard this term thrown around. Lemme break it down for you, inspiration porn is when you see a photo or video of someone in a wheelchair or visibly disabled doing something completely ordinary. It's then held up for all to see, usually with the words: What's your excuse? It's the bane of disabled lives because we're seen as so tragic that we simply exist to build up abled people and show them that if we can do x then they should be surpassing us by miles. It's a similar kinda thing to that saying: The only disability is a bad attitude. Which is crap and allows me to use this gif to convey it.

 
But this is something you should be avoiding at all costs when it comes to writing disabled characters. You should not be putting them up as the standard to live by, unless they're doing something exceptional for anyone. It should never be despite their disability. Of course mileage may vary here, but personally I find characters who are super awesome at what they do well-rounded when they're not being touted as so inspirational because they got the thing done while also being disabled.

#2 - CHECK YOUR TERMIOLOGY
This is something that applies to a lot of marginalised characters, and that is making sure you're using the right words to describe them. I can't talk on writing characters of colour and how to describe their skin tone and hair, but I can tell you that a lot of disabled people prefer being referred to as just that: disabled. Not differently abled. Not person with a disability. But disabled. Again, mileage may vary and it's not something you have to take my word for, as I said above, do your research and talk to people with that disability when writing these characters, especially if you're not disabled yourself.

Another word that I would rather not be used by those without a disability is the word cripple. It's been a slur against disabled people for a long time, and while some have reclaimed it, myself included, it's not something that should be thrown around. On top of that things like wheelchair bound are seen as a no-go. My wheelchair frees me, it doesn't bind me. In that regard something as simple as switching it to wheelchair user, can be a better idea.

#3 - HAPPY ENDINGS ARE OKAY
As I mentioned above, a lot of the time, disabled characters don't get happy endings. They either die tragically and that is seen as a happy ending, or they get erased from the whole thing. It's okay to write a character who doesn't get cured and yet still survives to tell the tale. On top of that, it's more than possible for someone in a wheelchair or with a disability to have a good ending. To have been part of the action and gone on to have a rich, fulfilling life. It's okay to let us be happy and it's okay for us to stay disabled.

#4 - LOVE HAPPENS
This is something that is shied away from a whole lot and it's a pain in my backside. Disabled characters can have love interests. We can even have sex should we wish to. We're not so faux pas as to never get the girl (or guy) because we also happen to wheel rather than walk. So if you're thinking that your love interest can't be with a disabled character because of the disability aspect, think again, it's possible, it happens, and it should be shown in fiction!

#5 - CURING ISN'T THE END ALL
I touched on this a little in some of the other points, but not all disabled people want to be cured. It was a big thing for me when J K Rowling announced that there were no disabled people at Hogwarts because they'd all be cured. It left a bad taste in my mouth because it just felt like erasure, which is what it is. Disabilities are real, they have a lifelong effect, and announcing that there are no disabilities in your world and therefore no need for adaptation etc, is lazy writing. There, I've said it, and I know I'm not alone there. Allow your disabled characters to stay disabled, because in the real world there are people reading who never get to see themselves in fiction, and who won't get a cure because there isn't one.

So those are my five tips and pointers when it comes to writing disabled characters. As always, if you have any questions, feel free to sound off in the comments below!

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Spoonie Writer: Being A Writer Revisited

BEING A WRITER REVISITED

As I sit here writing my blog posts, while nebulising an attack into submission, I realised that it's been a while since I talked about being a writer while also being a spoonie. I know I'm nowhere near the only one, and that's a good thing because I feel like spoonie writers bring about a different kind of character, but that's a talk for another day. The reason I wanted to go over this topic again is because of one I did recently about awkward conversations when being a crime writer (found here). I mentioned there that as someone who has a whole ton of random conversations about crime, I also get asked that question a lot too. You all know the one I'm talking about. It's the one I talked about in that real talk video (found here).

For those of you who aren't spoonies, or who just aren't following, lemme lay it out for you. When you're a writer, you'll get asked a ton by people what you do for a living. When you're a spoonie you get asked the same, but there's a whole different tone to it. This is how it usually goes.

THEM: So, what do you do for a living?
YOU: I'm a writer.
THEM: Oh that sounds cool! Do you make enough to live off?
[This is a really rude question btw!]
YOU: *shrugs*
THEM: So do you work anywhere else?
YOU: No, I'm also disabled/chronically ill/both
THEM: Oh...so that's why you're a writer! You  have nothing else to do with your time. Wish I had time to write a book.
[Also really bloody rude!]
YOU: Well, I do do a lot of work, it's just more about being able to set my own times, days and schedule.
THEM: *no longer listening*

I get this a lot. People assume that because I'm a writer, I work another job, which is a fair assumption to make since the majority of writers do work elsewhere because writing isn't a case of write a book, become a millionaire. However, when you bring your health into it, that's when the tone changes. Suddenly you're no longer a serious writer, you're someone with too much time on your hands and you "play" at writing. It's not a real job to you and therefore isn't valid as an actual occupation. And I have to say, it really grinds my gears when people make this assumption.

I mean, I know I'm not alone, and I know it's not limited to spoonie writers. I watched an awesome video about the things people say and questions they ask when they find out you're a writer (can be found here.) But when it comes to spoonies, the implication is that because we're also sick and unable to work a conventional job that we are, somehow, not really writing but playing a game that the grown-ups let us play. Like seriously? I'm 36 years old, I've written a ton of books and a few weeks ago I celebrated having been published for over 13 years. I'm an author. I'm a writer. And no one can tell me otherwise.

Remember that, and along with the rude questions of money issues, remember that you're valid no matter how you write. Whether you take years or months, whether you also manage to do some outside work as well. You are a writer. You are valid, and your stories are needed. Keep writing. It's gonna be worth it in the end.

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Real Talk #002 - What's Wrong With Joey?

That frequent question finally answered!

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Spoonie Writer: Taking Care Of You

SPOONIE WRITER: TAKING CARE OF YOU
 
I've been a spoonie for the majority of my life. I've been a writer since I was 19 and published almost 13 years now. One thing I have been very clear on is that you gotta take care of yourself. I've talked about this in other writing pieces, in vlogs, and all over the internet, but sometimes it's good to have a reminder of why you need to make sure you're taking care of you as well as your writing.

Now it's been a while since I did a piece like this, so I'm gonna quickly recap what a spoonie is: A spoonie is someone who is chronically ill and identifies with The Spoon Theory. How am I a spoonie? Well I have several chronic conditions including Fibromyalgia, M.E. and a rare form of asthma that leaves me reliant on oxygen and in a wheelchair. Now that parts over, lets move onto the main focus of this piece. Taking care of you.

In the writing world there is a lot of pressure to be working constantly. I see it, hell I even do it from time to time. There's also a big feeling that you should be pushing yourself to your limits to both write and build your platform. I am still considered a very small fish in the writing world and I doubt I will ever become a big one. Not because I don't want to be, but because there are certain things holding me back. Namely my health, or lack of it. I work hard, I write mostly every day and I make sure to stay on top of my own deadlines and everything that comes along with writing, but yet I still struggle sometimes.

A good example of this is last month I finished two books earlier than planned. I had pretty much a whole week to do nothing but various other pieces of admin. I could've started my next two projects and spent some of that time planning them, but I didn't, because I knew I'd been pushing hard and I needed to take a break. Now this applies whether you're a spoonie with physical conditions or mental health problems. I'm both and sometimes it's harder to take the time for myself when my anxiety of depression are acting up because there's a lot of stigma that surround them. People see the oxygen tubing and they give me a break for that, but when it comes to needing time because my depression is flaring and my anxiety is through the roof, it's harder. But that doesn't mean it shouldn't happen.

I know that there's a lot of talk about how people should be pushing past their barriers to make sure they achieve the maximum they can in any given time, and that's just not true. There are valid reasons for taking a break. Even if no one outside your own brain is saying that to you, it's still wrong. I struggle with taking time for myself. I don't want to let people down and I don't want to be the one who's always the reason for disappointment, but at some times, I do need to say no. I do need to tell people I need this time for me. It's not easy, not in the slightest and while yes, the majority of people should be understanding, there are some who won't be.

Here's the thing, writing is a creative pursuit. You're using all your imagination and time, and energy and all of that to create worlds from nothing. That has a toll on you. There should always be a chance for you to take some time for yourself, and if the people around you are saying different, then they need to take a step back. Again, it's not easy, I get that. I have friends who don't get that I need time for myself and I get how hard it is to say no to them, knowing that you're causing them upset and discomfort, but you need to take care of you. You are valid and no is a complete sentence.

So my advice is to take that time, take it slow and remember that you matter. You are important and alongside that, so are your needs. Now I'm gonna go and curl up with a book and have some much needed down time.


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Spoonie Writer - Being An Inspiration(!)

BEING AN INSPIRATION(!)

This is something I've been wanting to write for a while. It's something that a lot of spoonies (and disabled people in general) will have probably heard of, come across or being the centre of. And that's the idea that just because I'm disabled, I'm an "inspiration" to everyone. You've probably heard the saying: The only disability is a bad attitude. It's crap. A friend of mine did this wonderful gif that basically explains why it's crap. I'll add it below.

I know what you're thinking: what's the big deal? Why does it matter if people are inspired by you? You're badass and write and publish and all that jazz? What's the issue here? Glad you asked, because I'm gonna tell you! And if you didn't ask, feel free to keep scrolling, but if you stick around, you might learn something new and that's never a bad thing, right?

The issue isn't being inspirational because I wrote a book or two and am badass and all that. It's the fact that people who aren't disabled generally look at those who are as a source of inspiration in a way that's harming and pretty damn insulting. You'll have seen the headlines I'm sure, someone asked a disabled person out on a date, aren't they just amazing? Or the ones where you read about someone who did something "despite" their disability. The something can be as big as competing in the paralympics, or as small as getting through exams. The issue there is that, whether meaning to or not, the article is saying to everyone else out there: "What's your excuse? This pathetic being managed it, so should you!" And that's harmful af.

I am chronically ill. I am disabled. I wear oxygen most of the time and I use a wheelchair most of the time. I'm also an indie author with nearly 12 books out and over twenty written. The two have nothing to do with the other. That I'm disabled does not make me some inspiration. I'm not someone to be fawned over because I got out of bed "despite" my disability. I'm not someone to take pity of, or to use as you give yourself a pep talk. "OH Joey managed it and she's disabled which means if I don't, I'm less than her, and no one wants to be less than a disabled person!" You get what I'm saying here?

By all means, be inspired that I've written as much as I have, or that I've done things outside of the realms of the average human. But don't paint me as something to be admired because I happened to be in a wheelchair while I did it. Pity is a powerful thing, as is ableism. I know, I know, I used the a word and there are probably a thousand eye rolls right now. But it's an actual thing. I've dealt with it ever since I become a wheelchair user, even before that when the majority of my conditions were invisible.

There is a lot to be said for people who simply think that because I'm disabled I'm therefore less than. I'm not, and I know the majority of people don't see it that way. However, there are the few who do. They feel like the worst thing in the world is to be disabled. And it's not, quite simply, it's not. I have a full life. Yes, I have limitations in place because of the world not catering to my unique needs, but I'm still having a life. I'm still a person and I'm still someone who makes achievements. And yes, some of those are inspiring, but my very existence isn't.

Now, I know that some people will read this and think: Does she mean me? And the answer is, if I'm still speaking to you, probably not. I generally don't have much time for people who view me as a tool to beat themselves up with. Like just because I have the conditions I do and the effects it has on my life, they need to aspire to be better than I am because I'm disabled and therefore less than the average human. See what I mean about it being harmful? I write because it's part of me. I need to tell these stories and I need to tell them the way only I can. I post videos and blog posts as part of building my fan base and my platform and I do that because it's how I manage.

If you wanna be inspired about the number of things I get done in a month, great, but don't add on the caveat that I do it "despite my disabilities". I don't see myself as wheelchair bound. Without my wheelchair, I would be bound. I would be stuck in bed, inside and unable to do the majority of what I love. I wouldn't be able to go to signings or anything like that. I would be in a prison of my body's creation. My wheelchair is freeing. It allows me to do all the things I love and do them better and more often than I could otherwise. The oxygen also lets me do that. Otherwise I'd be stuck in bed. Same as my pump and everything else. All my treatments are there to help me live a full and happy life. They don't bind me, they allow me to be.

So, in short, I'm not an inspiration for simply existing, but I can be for being a badass writer. That's my thought for the day.

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Writing Disabled Characters [CC]

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Diversity Matters [CC]

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Tales From My Sick Bed: So When Will I Get Better?

TALES FROM MY SICK BED: SO WHEN WILL I GET BETTER?

Last week I did a blog post about the upcoming event - Darker Side Of Fiction 2017 - but this week I'm back to my short posts and tales from my sick bed. While I am doing somewhat better - my fever finally broke - it's gonna be a little while longer until I'm back on my feet and up to my usual antics. Of course as I said in the first of these, my writing doesn't stop and nor does my job which means a lot of juggling to keep up with everything while also obeying my doctor's orders and not overdoing it. That's harder than you think.

As I spoke about in my first post, when you want to do something, even if you are sick, you will generally find a way to do it. So long as it's within reason. I don't mean if you want to run a marathon while being a full-time wheelchair user, though I'm sure somebody somewhere will tell me about a friend of theirs who managed it. I was talking about smaller things, such as wanting to keep to my #JoWriMoGo schedule and manage to write more pages this month than there are days. I'm happy to tell you that I've beaten that already but I don't think this is going to be a record month. And neither will August.

In the past few days I have been spending my spoons wisely. I have videos to pre-record, which then need editing, uploading and captioning and while I would normally do this all in one day, in the past few weeks I've been doing it spread out to make sure that I don't make myself sicker. One thing my doctor was clear on, that while writing in bed is an option, it shouldn't be at the expense of my health. So I've taken to doing my daily reading in bed instead. I have a healthy TBR and am slowly working my way through the last in the alphabet series having started at the beginning a few weeks back.

This means that I can get more reviews done for the blog, so technically it counts as work - though not all the books I read I review on my blog of course. I've also been splitting my sat down writing time up to a bit every few hours. I find that the temptation to keep going when doing it all at once is way too strong and then I end up paying for it the next day. On top of that I have these blog posts to write as well. It's a lot of juggling, but it's worth it to make sure that I do keep going on the road to recovery.

So that's it for this week. Hopefully next week I might be back to my regular programming and all of that. Here's hoping!

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