Um, peeps without disabilities, we need to talk.

making-the-splot-face2

Yeah. So. Here’s the thing. People without disabilities, many, many of you need sensitivity training when it comes to disabled folks like myself. Like, big time. Because you don’t even know what you don’t know. And you’re hurting us with your ignorance.

Last weekend at a conference, I was scheduled to be a panelist to discuss how to write characters with disabilities in speculative fiction. I was all like, “Whoot, this is my jam! I am so gonna sit back with my fellow peeps and we’ll share stories and learn from each other.”

Except.

Except.

Sigh.

Nobody gave me any heads up that of all the panelists, I would be the only one with a disability. I discovered it as the talking began. My heart went into my throat but it’s not like I could flee the room. There were people who had come to learn. I have journeyed the spectrum from being invisibly to visibly disabled. I’ve a voice to speak about the prejudices hurled against people like me. I know how I want to be represented in writing. I’ve written characters with disabilities myself. I had stuff I could contribute to the discussion.

Oh. Shit.

I did my best to bring across the points I felt should be addressed: give us personalities, make us sexy, don’t create inspiration porn, we don’t need to be cured in your stories, and don’t write us to be pathetic and sad.

When I felt more and more questions were being directed at me, by a pretty rockin’ audience I might add, I felt really on the spot but I reached into the knowledge I did have and answered as best as I could. Without prep. Without another panelist in the know to correct me or add to my perspective.

Because I don’t have all the disabilities. There is a wide diversity of them, and I would have loved to have seen that representation. You just cannot have a panel about a marginalised group of people that should be own-voices, and fill it up with non-disabled people. Even if others with disabilities had to cancel, it’s better to cancel the entire panel, in my opinion, than have one person try to carry it. Or at least ask the one person left if they mind being a soloist. What if I had been ill? The entire panel would have had no representation of people with disabilities.

It’s akin to an LGBTQIA panel comprising only of cisgender, heterosexual people.

Now, I must say I have no issue with writers who aren’t disabled including disabled characters in their stories. Go for it! Get your sensitivity readers and make sure you don’t tread into own-voices territory. But just like how I include queer characters in my stories and have them thoroughly vetted by sensitivity editors, I stay away from certain stories I couldn’t possibly write because I wouldn’t have that personal, experienced perspective.

It’s not that I don’t appreciate non-disabled authors who do their research and want to offer their experience on a panel such as this, but I feel the vast majority of the panelists should be own-voices. Ideally, all the panelists would be own-voices, but we’d encourage you all to include disabled characters and then give you advice on how to do it best.

You know, like how I thought we’d do on that panel.

*cough*

I was shaken, livid, and really upset when it was over. I know I carried myself in my fun Cait ways, because I liked the audience and again, wanted to offer what I could. But throwing me into that situation with no warning was not acceptable.

Thankfully, I have the support of other friends with disabilities and we’re going to work together to help educate in these spaces.

Because an education is needed.

No one should be made to feel marginalised in what should be their safe space.

I’m making the Splot face right now.

/cg

CGAuthorCait Gordon is an Irish-Canadian warrior princess and author of Life in the ’Cosm, a space opera about a little green guy who’s crushing on the female half of his two-headed colleague (Renaissance). Cait’s also the editor of the Spoonie Authors Network, a blog featuring writers who manage disabilities and/or chronic illness. She likes cupcakes.

 

 

 

 

My First Week with Noola

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Isn’t she a beaut?

After years of needlessly suffering, I finally bought a rollator, which is a walker with a seat and wheels. I named it Noola, after the feisty character in Life in the ‘Cosm. Fellow author Jamieson Wolf said he was glad I named it that because, as he stated, “Noola would roll!”

Noola and I have been rolling, too. Because of the neuropathy I experience daily from fibromyalgia, I find it difficult to walk or stand for long. I’d been using a cane for years because nobody told me there were other options. HINT TO MEDICAL PROFESSIONALS: If you want your fibro patients to move regularly but they consistently cannot, please suggest accessibility devices!

Glad I got that off my chest. Ahem. Anyway, I’ve taken to the rollator like a fish to water. We had the worst weather, which was basically all seasons in one day, and I still went out for my walkies. It’s so much easier for me to get around and last week there were three days in a row where I clocked 3K each day. That’s enormous for me! Having a seat with me all the time helped. If I felt tired, I’d sit down, text my bff, drink an apple juice, and then continue on.

Even my first test-drive at a mall was super fun. I kept saying to my husband unit, “Let’s go here! Let’s go there!” I zipped around all over the place, like a hyper animal let out of a cage. After a few days I realised I had probably developed coping mechanisms for years, to keep myself from going insane due to being cooped up inside all the time. But since having Noola, you cannot keep me indoors.

I know I’m new to this, but . . .

Okay, so here’s something not as super fun that I’ve discovered: bathrooms, while using an accessibility device. Stuff has happened to me in bathrooms that made me feel pillow-wallopy. (I often threaten to get out the Whacking Pillow when I’m miffed.)

Now, I have a micro-bladder, and I understand if there are only two or three stalls and you feel like you’re going to explode, you use the larger stall if it’s the only one free. Also, if you have several children and a stroller and such, or have a genuine need to use the wider stall because those narrow stalls can sometimes be ridiculously narrow, I totes get it. But here’s a few things that I’d like to suggest if you do not have a disability and/or can use the regular stall:

  • If you are standing in front of the line inside the bathroom and see a person with an accessibility device and the larger stall becomes free, don’t go into the larger stall. Allow the person with the mobility aid to use the stall. We cannot fit into a smaller one.  (Totally happened to me this past weekend. More than once.)
  • Maybe don’t hold open the actual stall door for us. I’m not sure if it’s just me, but I found it a bit invasive and kind of creepy. A++ for effort, though. I could tell people were trying to be kind.
  • When there is no automatic door to enter and exit the bathroom, you can ask if a person with a mobility device needs help with the door. If they say no, don’t argue the point. Personally, I can get inside no problem, but it’s a pain when exiting. I wish all bathrooms had the automatic door openers. I really did appreciate when someone helped me there. But ask first.

Saying yes instead of no

The most wonderful thing about having Noola is that I don’t have to say, “No, I can’t,” to everything. You’d be surprised how much stress I would carry from thoughts like, Do I have to stand in line? and, I hope there’s somewhere I can sit, and, Is there much walking involved? Having a rollator takes a lot of that off my plate so I can just go out and enjoy myself. I spent last weekend at Ottawa Comiccon for all three days. Okay, so, it hit me on the Sunday that I overdid it because I was an enthusiastic puppy, but I had a great time. Last year I’d been almost weeping from pain. This year I zoomed all over the con, sat down when I wanted to munch on a snack, and zoomed around some more. I felt so independent!

I like how my future looks like it will be full of more yes answers than no answers. As an author, I want to see people and do all the things! When I’m not authoring, I want to get out with friends and see my family. My husband and I have started walking together again. I missed that.

It was author Madona Skaff-Koren who suggested I try her walker last year and then sent me to the amazing people at Ontario Medical Supply. Thanks, Madona! I owe you big time.

When we with disabilities encourage and support each other, amazeballs things happen.

Whee! (That’s my internal thought when I’m rolling with Noola.)

/cg

CGAuthorCait Gordon is an Irish-Canadian warrior princess and author of Life in the ’Cosm, a space opera about a little green guy who’s crushing on the female half of his two-headed colleague (Renaissance). Cait’s also the editor of the Spoonie Authors Network, a blog featuring writers who manage disabilities and/or chronic illness. She likes cupcakes.

My New Wheels!

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I AM SO STOKED, PEEPS!

My first-ever rollator (a walker with wheels) came in yesterday. This makes me crazy with happiness. Why? Well, simply put, I feel disabled without the thing, but with it, I feel able! You see, my leg neuropathy does not allow me to stand for long periods of time, or partake in many activities because I know after walking for a bit, I’ll be in too much pain to continue. So, I say no to things a lot. And an extrovert saying no to doing stuff with people sort of rots the soul a little.

BUT! Because I am a published author, there are conferences I must attend for learning and for self-promotion. I want to go to these events. And with this rollator, I can! Always having a seat with me is an enormous deal. Last year at Can*Con 2016, people suggested I sit on a window sill while waiting in line for a panel. That was a solution, I guess, but not a very good one. Also, I kinda hate asking people for chairs all the time. It’s going to be nice just to chill and be independent.

I’ve been using a cane for so long, I know I’ve been compensating and not working all my muscles properly when I walk. This accessibility device is going to force me to move it, move it! I have a goal of eventually walking in charity marches (like 1K, 2K, and eventually 5K). I don’t care if I come in last, either. It will feel good to be athletic again.

Also, I need the rollator inside my own home. I never realised that before. Huh. Discovering new stuff all the time.

The thought of not fretting in advance about how long I’ll be out takes a whole lot off my mind. If I’m shopping and I’m tired, I can sit for a spell. Same with walking outside. I can try longer distances because I know I can take a breather whenever I need to. In the suburb where I live, there’s nowhere for me to stop and sit.

The occupational therapist who assessed me told me that it was great that I had such a positive attitude in admitting I need the rollator. I told her it will open so many doors for me and that I was fed up of staying in the house, relying on rides, or the usual, which was saying, “No, I can’t do that.”

Going from ‘I can’t’ to ‘I can do this and I can do that’ is like winning the lottery.

I have a disability. It doesn’t have me.

Oh yeah, this morning I saw a photo with two ladies fencing while using rollators. That’s a thing, right? Because I so wanna be a walker Jedi.

*rubs hands sinisterly*

/cg

CGAuthorCait Gordon is an Irish-Canadian warrior princess and author of Life in the ’Cosm, a space opera about a little green guy who’s crushing on the female half of his two-headed colleague (Renaissance). Cait’s also the editor of the Spoonie Authors Network,  a blog featuring writers with disabilities and/or chronic illness. She also likes cupcakes.

WRITE EVERY DAY! Or not.

This week the awesomely awesome author S.M. Carrière wrote a blog called Can we not? The essence of the piece was how much some writers feel they need to dictate to other writers about how they should and should not be. In my comment I wrote:

I think I’m overloaded with writers on [social media] telling us what to do. I’m not so great at taking orders (Irish, you know.). One of the worst for me is the: YOU HAVE TO WRITE EVERY DAY! EVERY SINGLE DAY. IF YOU DON’T, YOU’LL BE A LOSER WITH NO FRIENDS, YOUR LOVED ONES WILL FORGET YOUR BIRTHDAY, YOUR HAIR WILL FALL OUT AND GROW BACK AS WORMS, AND ALL THE NEW-BORN PUPPIES ON THE EARTH WILL DIIIIIIIEEE!

I have a hard time expressing myself.

An occupational hazard of being an author is you tend to follow other authors on social media, then the ALGORITHMS OF DESTINY find out your interests, and you’re pummeled with articles and adverts. One that gets to me is the “Write and publish a book in a weekend!” course. (Yeah. No. Go away, mkay?) When adverts find me, I can meh them off most of the time. My problem is more with writers bullying writers on how to do pretty much everything. This is not the same as sharing tips or experiences that someone thinks might help. This is more like: there is only one way to become an author. Or even worse: you’re not a real writer if...”

Not coolbeans, peeps. Some writers never write books; they write blogs and they’re good at it. Some writers become self-published authors. Their books seem real to me; they have words and everything. Some writers can push out two books a year. Some take a decade to write one. Still all legit in my eyes. Some writers are super structured with outlines. Others open a laptop and go, “Wheee, I have no idea where I’m going and I love it!” (I might resemble that last person.)

Some writers are able-bodied. Some have disabilities that impair cognitive function. Some can blaze on the keyboard with ease. Others have too much pain to type or even sit up to use their dictation software. If you command that all writers must write every single day, can you see how this might be an ableist thing? Maybe let’s not assume everyone’s life is exactly the same.

laptopSo, let’s think twice before telling another writer what to do, or making them feel like they can’t sit with you. (Oh yeah, it’s Wednesday! I better wear pink.) Seriously, though. Be kind. You can go very far in life by being encouraging.

And if people have quirks that drive you bonkers, take advantage of filters and mute functions. You’re not tied down like the guy in A Clockwork Orange. Chill, doods.

I see this post is also telling you how to be. Oh well. It’s hard to avoid that. I hope you interpret my message as a Be Excellent to Each Other sort of thing. That was my intention.

Write as much you wish, when you wish. I won’t judge.

Peace.

/cg

CGAuthorCait Gordon is an Irish-Canadian warrior princess and author of Life in the ‘Cosm, a space opera about a little green guy who’s crushing on the female half of his two-headed colleague (Renaissance Press). She’s also the editor of the Spoonie Authors Networkblog.

My First Time in a Wheelchair

As many of you know, I’ve a disability that affects my mobility. In 2016, I decided enough was enough and I would make use of mobility devices so that I could have a better quality of life and stop saying, “I can’t,” to events. The reason it took me so long to get there mentally was because I was giving into other people’s ideas that exercise can cure me forever and ever. So, I suffered needlessly as a result. A singular thought– I am the boss of my body changed my attitude for the better.

Around my house, I very rarely use a cane. I mostly rely on my own power. Outside of the home, I carry a cane because it helps me to keep better hip posture and I walk faster. It also helps me when my knees randomly conk out. My next purchase will be a rollator (a walker with wheels) so I can spend more time at conferences or CONs, and to be able to stop and sit in the thing. Standing in line is extremely painful for me.

This past December, I sustained three sprains in my feet after a mishap on some stairs at a restaurant, which created a whole new world of nope for me. However, I was not going to miss seeing Kinky Boots at the NAC on Dec 31. I remembered that they had wheelchairs at the NAC, and when my husband and I went to the show, I used one to get around.

I must say the staff at the National Arts Centre are wonderfully helpful. They were stellar. But I didn’t have a great experience. Not because of NAC staff, but because of the NAC patrons. Humankind disappointed me that afternoon. I thought certain behaviour around people who are disabled would be common sense, but apparently it’s not. So, the next section of this article will be called:

Bleeding obvious things you shouldn’t do when someone is in a wheelchair

wheelchair-pinkI’m sorry if this insults your intelligence, but some people need to be schooled.

1. Talk down to us

Speak to me like I’m a grown-up person, okay? I’m just a woman sitting in a wheelchair. I can understand what you’re saying without you talking to me as if I’m four. You don’t have to patronise me because you feel sorry for me, either. I don’t feel sorry for me, so let’s put that one away, mkay? Thanks, doods.

2. Squeeze past me on a narrow ramp

OMIGOSH, can you not wait the 30 seconds my husband needs to negotiate the chair and me down the accessibility ramp? So many people pushed past us in a very tight space. This ramp is for people like me, not able-bodied people trying to dash by as if their trousers just caught fire. WAIT! Wait for us to go through. What is the matter with you???

3. Push past us into the smallest elevator in town and insist there’s room

This is when I wanted to slap people upside the head with my cane. My husband and I were all alone, waiting at an elevator, when several people arrived. The elevator doors opened and they piled inside, shouting, “There’s room, there’s room!” Yeah, no, you clueless trolls, there wasn’t enough room, because the wheelchair needs to be turned to fit inside the thing. I barked at them and told them we’ll take the next one. They looked sheepish, but I was fit to be tied.

4. Use the washroom assigned to disabled people

You know how I know when someone who is able-bodied is using the accessibility bathroom? The expression of extreme guilt on their face coupled by a bolting escape. This was rich, too. The only bathroom I could access because of construction at the NAC was through a parking garage, by a men’s washroom. Now, peeps, you know that men take no time to pee and flee from their washrooms, right? Welp, one fellow decided to use the accessibility washroom and the look on his face when he saw us waiting outside told it all. My husband was the one to pick up on that. I was still fuming from the ramp-crowding people. (This wasn’t the first time I’ve experienced this at the NAC, btw.)

Come on, people, you can do better than that.

I wrote a letter of complaint to the NAC about my experience, asking them if they would post signs and such at elevators and bathrooms, telling people to give priority to people in wheelchairs. The person who wrote back sympathised with my complaint and will take actions to inform staff to be diligent. They agreed with me that these things should be obvious.

Are we so disconnected from each other these days that we’ve forgotten common courtesy? Are we so self-centered that our being in a rush for everything makes us too impatient to (1) wait a few seconds for a wheelchair to pass, and/or (2) to catch the next elevator? Do we just have no more freaking manners?

I’d like to believe we can do better than this. However, it seems like we need reminders. So, here’s the thing, in a nutshell:

Make life not so much about you, but remember to consider others. Treat people with dignity and respect. If you have the privilege of being able-bodied, then kindly give priority to people with disabilities and don’t use their designated spaces as shortcuts for your own convenience.

Do we have that? Good. Because holy schnikies, peeps. Don’t make me come over there. I might have a disability, but I can go from friendly to cranky in six seconds if you disrespect me. Irish, you know.

/cg

CGAuthorCait Gordon is an Irish-Canadian warrior princess and author of Life in the ‘Cosm, a space opera about aliens with issues (Renaissance Press). She’s also the editor of the Spoonie Authors Network blog.