International Wheelchair Day?

Did you know that there is an International Wheelchair Day on the first of March? I had no idea. I have things to say on the matter:

Yes, I do think it’s a good thing to have. It reminds people that there are some of us in a wheelchair. There are a lot of us, for sure. However, there is a very small percent of the world population. I feel like pointing out that fact may create a social backlash revoking some accessibility actions.

I would love to be proven wrong. I want the world to be accessible. Not even for me, but for everyone. Let’s face it: who doesn’t love being able to reach things on a top shelf? Who wouldn’t benefit from lighter, more accessible doors? I am not saying that a ramp into every location is nessissary, but not having access to even a temporary one, is just selfish at this point.

I am not going to go out of my way to make an issue at every place I go if they are not accessible. That’s not my job, and it is too large of an issue to put on one person. I am going to scream into the internet and point out just how STUPID it is when things aren’t. If you are a store, you are cutting yourselves off of a potential source of revenue.

I went on a rant a few months ago over on Twitter about how stupid it is when companies brag about having accessible parking now, only because not having it stunts any potential client growth, but now I am going to leave this here as a point of rally for people with disabilities of all sorts to raise their voices. I know that there are some things that are impossible to plan for, but at least companies should try. Just try.

Wow: got sidetracked there. My initial point was how I didn’t know International Wheelchair Day was a thing. I blame society. Yep. Point finally concluded.

Mildly Angry

I had this long post talking about the current climate with the impending health crisis and isolation. I also talked about how I am fixing things in regards to my book on Amazon dot com and brought up different things we could all do instead of just bashing our heads in silence. I talked about feeling like a burden to friends and family. I wrote about how horrible everything may seem, then came up with this fantastic anecdote to ease minds.

I wrote over 1000 words, then WordPress was a douche and erased EVERYTHING. I don’t know why, what I did wrong, or if I can ever fix it.

So, I am not going to let it win this time. I am writing a short post expressing my disappointment. Before anyone says “hurr that’s wordpress hurr”, I know. I have heard of such things happening. I realize that this is far from a perfect platform, but this is all I can afford right now. So fuck off.

The short version of what I was saying about the book: Amazon dot com is still showing the first press of You’re Not Dead, meanwhile Kobo is just being stupid. I recommend using the Friessen Press bookstore directly to ensure that you are getting a right press. They are not expensive, and have printing offices in England and the United States (if you’re concerned about shipping costs).

In the meantime: I am going to cry into a pillow and hope my dogs leave me alone long enough to find some sort of

Be Socially Awkward

Hi! Hello.

FUCKING HI!

Yeah. Big surprise! I like being socially awkward. Why? Because it keeps things interesting! I enjoy seeing how other people will react to me saying an off-colour joke or being too loud in a library.

From what I can see, there are four kinds of people:..
well, more than four kinds. But, this is observation, and I am too lazy to dive into every GD personality type!

There are people who shy away from your actions. The people who either cover everything up OR they try to silence you. They are the ones who take a few moments to figure out how to best do something the first time. They are (overly) conscious of everything they say, and actively get offended on other peoples behalf for ever thing said.

Then, there are the people (like me) who don’t care what they say. There is never malice behind what they say, but they do take some form of sick satisfaction from watching the other group cringe. Usually, they say the wrong things on purpose to prove the point that the true basis for the hatred of topics or terms is just as offensive as saying them.

Then, there are the bigots. Those who say stupid shit because they are trying to be funny. Also in this classification are those who say things to hurt other people. I have little respect for them (yes, I do see the irony) and I have a hard time understanding how people like this can still exist.

The fourth category is the most unfortunate. Those who say something with no intent to offend anyone, but they say egregious things that get them into trouble. Listening to someone from this category is an exercise in schadenfreude.

Being socially awkward is more than just being offensive, and that’s where people seem to fall a bit off the mark. Being socially awkward, to me, is bending expectations and unspoken laws of normality. Pointing out flaws in your person to a group of people who don’t know you? That can create the most fantastic miasma of groans that can never be expressed in text.

The hardest part, for me, is letting people who don’t know me well that I am joking around. There is nothing worse than pointing out that I’m in a wheelchair to have it followed by dismissive comments about how other’s have it worse or things of-the-like. Even worse than that is when someone piggy-backs off my statement and follows it up with something actually offensive. Just because the cripple said something detrimental to some cause does not give an able a pass on stupid.

Wheelchair Update

This is going to be interesting.

NEW DISCOVERY! Sarcasm doesn’t write well.

This is probably only interesting to a portion of people who actually keep up with this blog. Even with that demographic in mind: my writing on this topic will only interest a few.

Since I got my own wheelchair six years ago, I have had a piece to my chair that I have both loved and hated. It was supposed to be support for my knees, and was issued to me when my mobility was less.

The medical purpose for it is to keep my legs at a comfortable angle. Because I have an air cushion that does not work right, it had a tendency to sit higher than what the rest of the seat would. It would then cut off blood flow to my feet and was incredibly uncomfortable. The main reason I used it was to hold my cell phone somewhere other than a pocket. It was good for that.

A while ago, an OT commented on how this piece of kit was too far forward. She informed me that it I couldn’t move it back, just remove it all together. I was hesitant: I was under the initial impression that it was to keep the cushion raised and supported.

I removed the plastic sheet last night. It turns out that it was completely unnecessary. Now, my chair is smaller than ever before! I say that because it is both a blessing and a curse.

The two inches that it gave me, it turns out, changed where my centre of gravity was while doing general things. Even the small wheelies I would perform to get over small objects feel, though the wording is a bit strong, dangerous. Though I just removed maybe one percent of the volume of my chair, is has changed the feeling dramatically.

I want to say that I hate the change, but that would not be entirely true. There are parts that feel almost threatening, but I am certain that, with time, I will be able to get used to it. I still have my air cushion for now, though I hope to be getting a solid seat soon.

It’s funny: the woman that I got the seating from described the air cushion as a “Roles Royce of wheelchair seating.” Though I have no reason to disagree with her, this is my 3rd cushion and even it is fucking destroyed. So, I submit this query. Is it worth spending more money to get something that could be great for a little bit, or dropping less money for something that might just be okay for a longer time?

FIRST WORLD PROBLEMS, AM I RIGHT?

Personal Blog

I haven’t written one of these in a while. I just don’t think that I’m particularly interesting, and I have a hard time thinking that anyone would have any interest in anything that I am up to. So, I guess that’s the warning!

I wrote a new book! Not that I haven’t been riding that train for weeks now…

It’s been re-released under You’re Not Dead, but I fixed the grammar and spelling huge, plus I filled it out with fictional bits. It now sits just over 200 pages for the physical copy. Amazon has been… awkward… with their restocking of it, but the store over on Friessen Press works beautifully! They print on demand, as well. That ensures that you will get the right version! I am still looking for a publishing agent, and that journey is hard and depressing. Yet, this is the path I chose, kind of. I only say “kind of” because, if you have listened to my PodCast I did on Taker Wide in the past, you know that art is less of a choice and more of necessity.

I’m pretty sure that I have mentioned this part before, but my wife and I moved back in with my parents last year. It’s going well! I will say that I haven’t seen many friends since we moved back here, but that isn’t a huge change since Burlington.

If you aren’t awkward with south-western Ontario, that’s less than an hour away. Unfortunately, it is a separate health system, so it’s a bitch to get everything reset as far as doctors go. We’re slowly figuring that out. In fact, today I have a place that I’m going to! Right on time, as well!

I have written the next ansP recently. The last one underperformed, but that is, in part, due to me not realizing what day is was being released. If you haven’t read it, go do so (please). If you have read it, what do you think of it? It was fun to write, but I don’t intend to do the same style anytime soon. If there is an interest, though, I will write another one.

We don’t have wheels any longer. We got rid of our car recently, because upkeep was too expensive. On that note, the Patreon is very close to $100, and I find that stupid exciting. It would make it possible to go to events and maybe do meet-ups in the future!

Check Your Inspiration

To start, this is not an attack on anyone. This is more a dissection of the situation at hand than a low-blow or a pathetic passive/aggressive barrage. I want to make people think about what they are sharing, not berate well-wishes and honest attempts.

I was sent something the other day showing a kid, after seven years, getting over his quadriplegia. It was amazing, to be sure, but the person followed it up with something along the lines of ‘look what he did! you can do it, too!’

Was that intended as a slight? Hell no. It was from a good friend who I have known forever, and I love them very much and hope they love me the same. Was it without forethought? Absolutely. The video they shared had many things different from what I experienced.

1. Accident implies spinal issues. I have brain damage. They are two very different things.
2. The equipment being used in the video are things that I have never seen before, let alone used. It is actually impossible to say “hey: this kid learned to walk in seven years. why can’t you?” in this situation because I don’t have access to everything this guy did.
3. There is no information on the personal goings on with this kid. Is he poor or rich? What kind of healthcare does he have access to? What other consequences other than the quadriplegia did he experience?

I am far from ragging on this kid. He went from having no fine motor skills to walking (with a walker, but still). It was impressive, but to turn around and ask me why I am not doing what he is doing is saying that we have the exact same experience. That is diminishing what I have been dealt, and is trivializing what he has accomplished.

-RANT-

While I have your attention, my book is available some places! I have links that can be found here, but it’s still being pressed and I don’t even have my copies yet! If you wish to order it, that’s amazing and I hope you enjoy! I will post way too much when I get my copies and even more when I have actual order information that I trust!

Hey: Some news!

  1. I finally got around to editing some footage from The Twin playing Warped Tour. I have had the footage for a number of years, and I finally got around to editing and fixing all of it. YouTube compresses the footage in a way that makes the audio very blown out, but I am happy with the way it turned out!
  2. As I am sure you have noticed if you follow me on either Twitter or Facebook, I have been shopping my book around for an updated, and better, release. Friessen Press has agreed to re-release the book with all the revisions and additions. You’re Not Dead has tripled in size, and I will keep you up to date with actual releases and whatnot. The latest release, if all goes well, is early 2020.
  3. The last anewin release has performed very poorly. I think just due to it not being advertised well on my part. A large part of that is because I have been so distracted with the re-write of You’re Not Dead and contacting agents. EXCUSES EXCUSES. My end point is that I am very proud of it and feel that it is being ignored. At the risk of alienating people, the point of this story was to illustrate the issue with not being afflicted by what you are rallying for: the almost dismissal of situational differences because of the systematic coat of paint left by society.
  4. Why am I posting while on “hiatus”? Simple. The break was more to announce a dramatic decrease in updates, not to up and vanish. I do not see myself doing many more releases before the new year, but you never know what will happen.
Enjoy the noise!

Wheelchairs are Not a Death Sentence

I was talking to someone a while ago online so they could not see me. It was an old friend who I had not talked to in a number of years. We were talking about how last they heard anything about me, I was about to die. They explained that they were distressed by the news, and they wished they had been able to make it out to show their support to my family when the worst came to pass. They had not kept up with anyone, or looked on social media to see how I was doing. They then notified me that they were going to be in town and asked if they could come by to see me.

Not maliciously, I agreed and they made plans to come by. I was very excited: this was a friend I had not seen since high school. We were never that close, but the exchanges we had were pleasant when they happened. We had gone for coffee about a decade ago, run into each other at concerts, and we worked in close proximity. We never had many mutual friends, and our circles of connections were never close.

When they came to the door, I opened it. Imidiately, they broke down into tears and started murmering “I’m so sorry” between sobs.

I cannot say I was offended. I really did not pay much head until they gestured towards the wheelchair.

“I can’t believe this. You used to stand so proud.”

I was more taken back than offended. The implication that I was not at all the person I was before the wheelchair hurt. The judgement was made before they got to see what I had been doing: before they said more than ten words to me, and before I could even respond. The idea that the chair was a status instead of what it was: an aid.

Wheelchairs are NOT to be a reflection of who you are talking to. Yes, life is more dificult in some ways. Yes, I am in the chair because I cannot walk on my own. No, it is not dictating parts of my life.

To assume that my everything revolves around the chair is rather shallow. It shows a level of disregard for me the person, and a fixation on me the object. I cheated death twice, not being able to walk is only a minor repercussion.

Yes, being in a wheelchair does suck, in some ways. However, it is how I function and get around now. I will not say that it is preferred, but I refuse to bend to it being the worst outcome for any situation. I got out of my brain swelling with only minor brain damage that effected mostly superficial parts of me. I know it sounds bad, but I consider that a win.

No, I cannot work right now, and it sucks. So I write non-fiction to busy myself. To express creative endeavours, I write fiction. I am trying to get published because I know that, with proper support, I can do that. I am not even eluding to accessibility support, I am just terrible at marketing.

Tangent aside, if someone in your life finds themselves in a wheelchair, find out how they feel about it before jumping to condolences and depression. They might be in a good place, or even the best place they have been in for a while.

No.

I have been stewing over this topic for days. The idea that you can do anything if you try hard enough, you can make it. I hate this concept, and I want to fight it to the best of my ability. The wall I hit, however, is that I cannot dispute the necessity of trying regardless of end position. If you work hard, you will be compensated. If you do not work hard, you will be repremanded. To assume that it just takes time and elbow greas to make it somewhere can actually be both heartbreaking, and damaging to standing in the greater endevour climate.

I spent over 10 years in bands trying my hardest to make it. There was a constant climb upwards in the scene, do not misunderstand my points, but I always put out multiple times what I made. I offset any sort of financial downfall with jobs. I did music because I loved it and needed to do something creative. I never had any illusions that I could live off of it, though it was an end goal.

That unfortunate reality goes for any artistic doing. You can try, you can succeed, and you can fail. Sometimes, all three in the same week. To assume that you are going to make it big is dangerous. It does happen, but it does not more often. There are so many things at play when considering a career in the arts, and doing one thing is often not the path to go down. To assume that if you just write that one song that everyone will love and you’ll be fine is actually a safer bet than believing that your band will do gang busters.

Another way to look at it: I was a drummer. That means, that under copyright laws in Canada for a musical composition, I had rights to the recordings of my drums. If the primary song writers could rerecord my drums without my knowledge, they could have stripped me of any financial rights. Lucky for me, I played with collections of stand-up people who never even thought of doing things like that. Instead, we kept playing. Getting gigs whenever we could, going on short tours, recording albums out of our pockets, and not eating.

10 plus years of that. Now, three years writing. No money made, but a fuck-tonne put out. That’s part of why I opened up the Patreon. just $1 a month gets you a subscription. That means you get a list of your name on this site, plus you get ansP releases about a month before anyone else in a fancy PDF! Hell, if you donate $10 a month, you get the pleasure of knowing that I consider you a fantastic human being and I will love you for a very long time! Your name gets put on the list with a little note of FANTASTIC put beside it. Even if you cancel your donation, or lower it, that denotation NEVER goes away!

Patient Zero

I created something that I think is okay.

Well, just the video. The song was given to me by my old guitar player {Hannah Rae Jordan} months ago, and I have been trying to figure out a way to share it with everyone since.

She has informed me that this was just a demo, and it has gone through many permutations since this recording. In fact, she claims that it’s far from done.

This does not change the fact that I love this recording very much BECAUSE it feels like a demo. This hiss, though probably not intended, fills a void from the lack of bass. The missing drum track also adds to the almost haunting feel of the song. I would argue that my horrible camera skills do not do the idea of this song justice.

Please, give it a listen. Give me (and her) feedback on the ideas at play. Very rarely, in life, do we find something that reminds us that there is beauty in the chaotic. This song reminds me that everything will be okay.