Blog #3

I actually forgot the format for the title of blogs and had to do some searching.

Hi there! I have started going down the dark cave that is writing a new book. I’ll let you know what it’s about and how it turns out in a week or two (because even I am not sure). I am currently writing one story based around one character, but I am tossing around the idea of writing several stories and make them all intertwine somehow. Thoughts? Ideas? I have great confidence in what I am doing, but I am worried that I am just trapped in my head.

Otherwise, life has been okay. I am lonely (as Tasha works 8-9 hours 6 days a week) but I have 3 fuzzy friends to keep me company. I am an hour (give or take) from most people I know, and those who can make the trip work a fuck tonne.

I have started pushing myself in new ways. For instance: I currently cannot go from sitting to standing without something to hold onto. To combat this, I have been putting myself in more and more awkward situations and forcing myself to deal with them.

TO BE CLEAR: I am being safe.

I know myself. I know that, if I hit the ground, it could be devastating. To make sure I am okay, my end goal is ALWAYS my wheelchair. I also make sure that my walker is close by. Barring those two things: a surface to get a hold of. Still no luck to bring to light, but I hope to report something soon.

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I Wish This Was Known

The stigma exists that people in wheelchairs are just leaching off the system. There is this miasma of assumption and a total disregard for any fact. What is an unfortunate truth is that we are forced out of regular society, crippled by expenses, and are crammed into having car expenses without having the car.

Forced out of regular society? That sounds a bit harsh. Unfortunately, even with laws put into place to make sure everywhere is accessible, there are loop-holes/there are ways around it. Between thresholds being too high to navigate in a chair, to washrooms that are just there to placate those who care, very few places are actually wheelchair friendly. My old tattoo shop is a great example. The only reason I do not have more ink on my flesh right now is the foot-high lift from the road to the door. I do understand the purpose, but it does not change the fact that I cannot go in there. Not right now.

Expenses? Try $60 (CDN) per barring for my front tires. Try the thousands a decent wheelchair costs. Try the fact that there is minor funding through government agencies, but you are still required to pay out of pocket a hefty sum. The base price for the wheelchair I use is $1675. That does not include the REQUIRED custom seat ($458) and the special backing ($535) OR any upgrades and changes that are required in the future. Hell, tire replacements start at $65 a tire. Yes, that is a mandatory change when it comes time to it.

Now, does all this bitching add up to the prices dictated by a car? Hell no. I am well aware of that. However, the segregation from society makes collecting an income very difficult, if not impossible. I cannot go back to my old job. I know for a fact that I am not alone in that. So, am I trying to say that the money spent on a wheelchair is as much as a car? No. Percent wise, however, they are comparable, if the wheelchair is not more.

To try to overcome this ridiculous debt that could be gained by being in a wheelchair, I wrote a book. I want to be an author, and this book is my first attempt at being so. I really do ask that you at least consider it. E-Book copies are very inexpensive, and physical copies are available (if you like them as much as I do). Depending how this all goes, I have another book started, and it is looking like it will be a good one.

What I owe.

Yes, I owe nothing. It does not matter whether I live or die. It does not matter what condition I am in, either.

I started that off a bit harsh. What I meant by the whole living and dying part is that I deal with my own life. Yes, my demise would be sad for a few people, but they have to carry on. If I stopped posting on here/on FaceBook/on Twitter/on Tumblr, it might raise a couple of eyebrows and cause temporary sadness. I may have communicated with a number of people, but I do not impact lives on the grand scale. I am not the reason that you wake up in the morning, have coffee, or breakfast. Not doing those things would result in your death. Do not comment that I matter in your life, because you are either lying to me, or yourself.

The wheelchair is my burden. Sure: there are things I would love to do, but cannot due to this chair. Touring in a band being the big one. Me being in the chair does not stop you from doing what you want to do at your own pace. That doesn’t mean I do not appreciate when people are disappointed I cannot do something they want to do with me, but using my disability as a reason or crutch why you cannot and then making me feel bad about being unable to join you is the furthest thing from fair.
There is a very good chance you wanted to do ‘thing-X’ with me because you were convinced I would enjoy it. People need to remember that I cannot do it with them and that mean everyone. For example; if you are against sitting in accessible spots but would like to go to a movie, too fucking bad! They are there to help me out, and I fully understand they serve no purpose to you. Go sit somewhere else and ask me my opinion after the movie.
Unless we are on a date. In which case: let’s hold hands!

I realize this update sounds rather harsh, but getting angry with me for not being able to do things that you want to do is stupid. People use guilt and blame there inability to do something on me being in the chair. All it does is make me feel bad for something I did not ask for. That hardly seems fair, to me.

Book

Bad Cripple Day

What is a bad cripple day? It is a day where nothing works because of my condition. It’s a day where I have a hard time moving across the room, or boiling coffee, or making dinner. It’s always silly and stupid things, but never just one thing.

What I am finding awkward is how many people do not like that I use that phrase to describe my day. Yes: I know it’s offensively put, but it brings me joy in how blunt it truly is. I gain great entertainment from saying those three words.

Is there such thing as a good cripple day? No. On that note: I would not need an inappropriate phrase to raise my spirits if I am in the middle of a good day.

Please, buy my book.

How To Talk To People

I am not going to teach you the ways of being social. That is something I have and will always be awkward and terrible at. I am going to complain about how people talk to people in wheelchairs, though.

There is nothing more frustrating than someone assuming they have to condescend to someone who is in a chair. There seems to be a strange assumption that people in a wheelchair are “slow” or are suffering with some sort of deficiency mentally. Yes: I am aware that you are just trying to be helpful. but it is offensive. There is a large percent of people in chairs who are actually incredibly articulate and we (of course, I can only really speak for myself) feel horrible when you do this.

Instead of assuming we are less than you (yes; when you speak that way, you are demonstrating a form of superiority), talk to someone in a wheelchair as an equal. Talk to someone as you would with anyone.

I hate that I have to write this, but the idea that people in wheelchairs are lesser humans seems to permeate the societal norms. Speak normally. Speak fluently.

It is VERY obvious when someone is doing this. Especially when we respond in a calculated fashion and the surprise on the perpetrator’s face cuts through an expression. There always seems to be a moment, an agonizingly long moment, of realization that they are following. There is genuine surprise when people can grasp situations. If you do this, you just end up looking foolish to the person you are talking down to. It may sound like this situation should be funny to the person in the chair, but it is not.

You are talking to the person in that way because you think you need to. We know this, and it is not a good feeling.

Again: I cannot talk for everyone in a chair. I know that when I am faced with the situation, I wonder if I do come off as slow. I immediately would have to talk to someone around me to make sure I can keep up with the conversation. I immediately start into religion, or international politics just to make sure I make sense.

PERSONAL EXAMPLE TIME:

I was tasked with this topic by Kelsey. She has always treated me as an equal and has exclaimed many times how she forgets I am even in the chair sometimes. She was actually caught off guard when she witnessed a person talking down to me while asking for directions to somewhere.

I was far from offended: it seemed like the person was just a patronizing neanderthal to everyone they comes across. It did not change the fact that Kelsey was completely flustered.

My reaction was, of course, “yeah. People are fun.” I really didn’t think anything irrational about the situation, for it was one I have dealt with before.

When it was clear Kelsey didn’t get my calm reaction to the situation, I started thinking. That was about the time I realized that there were a great number of people who were talking down to others while trying to be “caring” and “understanding.”

I get it. Oh good lord, do I get it.

I am in a very excellent position that I have people around me who do not talk down to me. It is strange, but they even view me as an equal.

I was so angry…

Hello and welcome to the Monthly Update! I’m sorry that I am not doing weekly any longer; I was a bit burnt out. HOPEFULLY this new update schedule will allow me to be a bit more thorough and will grant me the time to make sure updates remain interesting and methodical.

I was outside the other night, hanging out and laughing with some friends, when I was confronted with the most outrageous question.

“So, can you walk?”

It seems innocent enough in writing, but the inflection was that of assumption. The person who asked the question genuinely expected me to get up at that point in celebration of my legs and demonstrate how I am just using this mode of transportation because… uh… Maybe she thought it was a fashion statement?

Regardless of what she thought the end-game was, she was actually surprised that I took offence to the statement.

I raised my voice and shouted “fuck you, I can’t” and she got mildly confused. I tried to explain, with great conviction, that people are in chairs for reason. No one thinks “I’m going to hang out in a wheelchair this month!” Not many abled people, anyway.

The fact of the matter is that, yes, there are people who can walk that just need the assistance every once in a while.

There are people who are stricken down, rather randomly, by incredible joint or bone fatigue. They may go DAYS without a wheelchair, but eventually, their body will just “nope” that day and they cannot walk. There are people who have amputations and have a prosthetic limb that needs servicing one day, and they are in a chair for a while as it gets fixed/resized.

After I went on my rant and the girl left rather shaken up, my friend piped up exclaiming that she would not even ask why people are in a chair.

Initial shock had worn off, so (RATIONALLY) I explained that most people do not mind being asked (please let me know if I am wrong). Please remember you are talking to a person. They have feelings. They can read situations fairly well, at least some can.

The one warning I can offer: do not be offended if they do not want to talk about it. Do not be disappointed if they give a half answer and change topic. Either they will explain if/when they feel more comfortable with you. Or they will never explain. Maybe you asked at the wrong time. Maybe even they do not understand the whole story. Maybe they just DON’T WANT TO TELL YOU.

IN THE EVENT IT IS CLEAR THAT YOU OFFENDED THEM:
Just explain, as calmly as you can, that you are sorry. Tell them why you asked: most people in chairs are used to being marginalized.

People in wheelchairs are faced with scrutiny and inequality everyday. This idea does not even include those who already have very unhealthy feelings about being in a wheelchair. I cannot speak for everyone else, but I know I have had a very hard time feeling worthy of the title of “human being” because literally most of my body is chair. There seems to be a stigma that people bound to a wheelchair are “sick” and I know that I have been trying to get over that idea for the better part of two years.

Random Update About Things

I thought I would write about what is going on both health and life wise.

My muscles are coming back! The other day, I took roughly five steps in total! I repeat the process everyday. Sometimes, it is easier! Other times, I barely perform one. It has only been a week so far, but I have noticed some great progress already!

I have great weakness in my thighs due to atrophied. I am unable to stand without something in front of me. I have been working on that, however. I am proud to say that I can now stand with little help from my hands outside of guidance!

Now, if I could only do both at the same time…
Soon, I hope. Very soon if I keep on this path I am on!

I have also signed up for a wheelchair specified program at McMaster University called Mac  Wheelers. I have an assessment on the sixth and I am very excited. Very few people know, but I have actually been rejected from further physio-therapy. I have suspicions as to the real reason, but I have been told that I spent far too long in hospital and I need to look into private things to further myself.

NOW FOR PERSONAL STUFF!
I have started the process for an apartment. Natasha and I have decided to move in together, and we are 90% of the way through the paper work! A couple of things have come up to hinder our progress, but we are doing what we can to make sure everything moves smoothly!

As some of you know, I keep an independent music review blog over on Mind The Music T.O. and have for the last year almost every Monday. I recently came up with the idea of doing video instead of text reviews. Ideas? Comments? Recommendations? Please, hand something over. I really like the idea of doing a medium I have not experimented with, but I am terrified for the outcome.

BOOK NEWS

Book is with the editor now. I have written one revision, but the process is slow. PLEASE BE PATIENT WITH ME

Patreon.