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?

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!

IMPORTANT [or, the long name; why cripple punk is important]

Today, I did something I should never have done. Today, I looked up the keyword ‘wheelchair’ on Twitter.

Sound innocuous, right? Should just be the occasional stupid thing followed by a bunch of like-minded people discussing wheelchairs, right?

WRONG.

The first page was entirely animals in homemade chairs. Pretty cool designs. Really nifty for the “I love animals” crowd. Then, it was almost a page of tech surrounding wheelchairs. Prototypes, interesting chair designs, cars adapted for wheelchairs… that kind of thing.

I would argue for these kinds of posts existing. They are general knowledge, to an extent. That is not to argue how adorable that puppy is running for, in some cases, the first time in its life.

There was the standard frilly “you can do it” bullshit that seems to be everywhere when dealing with wheelchairs. I get the message, but the words do not fix anything. Plus, it places an unfair standard on those who will never be able to be what you think they should get over. These lines say nothing for those born with physical or mental disabilities…

Again, nice try. The intention is there, and though I personally get frustrated by such public displays, they do not harm anyone. I have never heard someone in a wheelchair get actually offended by these sentiments. Like always, feel free to prove me wrong in comments or whatever.

Then, there was a collection of updates that I was not mentally prepared for, and it corrupted everything I saw prior.

Update after update of companies announcing that they are finally wheelchair accessible. It was all like they wanted a pat on the back or some sort of award for recognizing people as people. It was incredibly hollow and self-serving. People in wheelchairs are, well, people. If you have to MAKE your location wheelchair accessible, you have to MAKE your store/company/whatever usable to a percent of the general public.

Yes, I realize that there in a silly small percent of people in wheelchairs. I will, however, point out that there is a large percent of people with mobility aids. Announcing that your building finally has accessible parking should not effect your bottom line, not having accessible parking should be hurting your bottom line. Finally catching up with the rest of society does not make for a good image. As stupid as it sounds, it’s the wheelchair COMMUNITY. If your place of business is not acceptably accessible, we do talk to one another. We will pass that information to friends, family, and neighbours. We don’t like being patronized, and we REALLY don’t like being singled out because of the wheelchair.

I might be putting my opinion as fact, I am well aware of that. This does not, however, mean that my opinion is only share by me. How many people remain silent because they do not have a soap-box to stand on, or legs to do so?

The Effects of Long-Term Hospital Stays

*THIS IS ALL FIRST HAND. I DON’T HAVE REFERENCES*

Now that I have the disclaimer out of the way, I am going to warn about long-term hospital stays and the effect on the mental wellbeing of the person in question.

Someone who is in hospital for any amount of time may be misdiagnosed as having depression or, in my case, brain damage. The patient can seem distant, gullible, despondent, or just all around wrong. The symptoms can include (but are not limited to) an unbalanced appetite, uncontrollable sadness, anger, sadness, and unwarranted outbursts.

To be blunt, this is not the fault of the individual OR the hospital. That person is used to life being one way, then (in some cases) literally have their independence ripped away from them. They might be used to keeping to themselves, then they have to socialize with specialists, nurses, and other patients. They might have their own regiment, now they have their day dictated to the minuet.

How does one treat them? With delicate understanding and a firm stance. You cannot bully them back to being “themselves”. You have to let them accept what’s going on around them in the hospital, and help them create new neural pathways to accept their surroundings.

Be careful when introducing new meds. Be sure everything in place is necessary. Do NOT be afraid to say that time is all they need. Last thing someone needs in time of emergency is to be on several anti-depressants when they don’t need it.

Please, if you have additional insight or know of better guidlines in how to cope with institutional stays, leave them in the comments. I am sure other people need them, and I would love some additional reading.guidelinesPlease, if you have additional insight or know of better guidlines in how to cope with institutional stays, leave them in the comments. I am sure other people need them, and I would love some additional reading.

This isn’t fair…

I cannot talk about what’s been going on for the last couple of weeks. All I can say is that I am in incredible pain, but in a good way. That sounds mad, I am well aware, but I’m thoroughly enjoying… X… Let’s call it “X”

I have been writing a journal in relation to X. The way X was pitched to me makes it sound fantastic and I am very excited to see what happens in two months. two weeks. two hours. Fuck me, I am in a lot of pain.

Anyway, I am trying so hard to keep this vague and I cannot help but feel I am failing. I am going to stop rambling in relation to X so I do not ruin.

Dare to be Morbid

I hit on this topic a month ago or so, but it came to light recently by a friend. He pointed out that I need a “Positive attitude.” I agreed, and acknowledged that I can be a bit morose, but I use my bleak outlook as comic alleviation. They immediately started pointing out how that is wrong. I am not denying that having a positive outlook is admirable, but being ostracized for being dark is extreme.

To look at the darker things in life can be shallow, but what does that say about life? If it is easier to point out and wallow in everything bleak and horrible, we have to look at our current climate and question the direction of society as a whole.

Where I deviate is that I point out the dark to accentuate the positive. I will help 10 old women across the road, then explain how patronizing and ridiculous it is that doing so makes me a good person. I am not doing it to minimize my actions, or to ridicule those who do not take them. I am simply examining what is going on and finding some sort of silver lining.

This world is scary. Life is horrible. We are all going to die. Now spin that! The world is scary, but it is scary because we do not look at what is possible. Did you know that your liver can reconstruct itself when just a quarter of its original size? That is fucking cool!

Life hurts. Heart ache, death, abandonment… So many things to fear and hate. It can also bring so much joy it can be overwhelming. Just look into the disabled community for stories that very much define how life can be amazing. Look at child birth to literally see a life that didn’t exist, exist! What the holy aweifoweifawefasfaweio — that’s so cool!

Yes, we are all going to die. That is a fact of, well, life. So, if that is such a fact, why ignore any part of what’s around you? Amazing things are only amazing in contrast to the less-than amazing. The time you don’t think that you made it across the street without getting hit will be the time you get hit. If you just celebrate the good all of the time, it will feel less good. If your zero is awesome, how could much be better? I’m done with metaphors to explain this. You need to look and laugh at the bad. It is a part of life – I would argue the most important part. It gives highs and lows definition.

Cripple Proud

I am a self-proclaimed cripple. There is a lot of discussion whether that is okay or not. I am going to give my 2-cents on that term, and you can feel free to challenge me to a foot race if you disagree with me.

To begin, I do understand the discomfort people have around the word. It is like any derogatory noun, but it just makes people feel dirty saying it as opposed to inciting violence.

The term should be used properly, and be (at the very least) mildly respected. By all definitions, I am a cripple. I cannot walk and I suffer from cranial damage. For me to call me a cripple, it is more in jest than self deprecation. If someone were to describe me as “crippled” I would take it the same as proclaiming that I wear glasses. In that case, it is no more offensive as someone using the colour of my shirt to pick me out of a crowd.

The more taboo phrasing is derogatory. To describe someone using that statement as part of an identifier is one thing. To define someone as a cripple is rather dangerous. Me, for instance, would find it mostly funny. If the topic was about going for a race and someone said something to the extent of “you have the cripple.” I would laugh, probably too hard. If someone came into a room and say “fuck, who let the cripple in?” joking, I would laugh. Really hard, depending on who it was. If someone bumped into me and said “fucking cripple” I would have to restrain myself not to hit something. The first two examples are saying cripple as either a mocking-identifyer or as a statement. The other is out of unnecessary frustration.

Now, I admit, the examples are poor. Anyone knocked by someone who then curses them out would be frustrated. I use that example more to illustrate using the term in passing as an insult. When you say the word to hurt someone, it is wrong, or “dirty.” If someone walks up to you and says “you woman” regardless of your sex, or gender, you would take it as an attack. That does not mean the word woman is bad in anyway.

Anyway, that is my take on calling someone a cripple. I am proud to be part of this community. The collection of differently abled people around are, for the most part, caring and loving. Of course, like every community, there are some bad eggs. My statement to them is that they should not be a bad egg.

Sidenote, if you want to make a pizza delivery person awkward, put ‘crippleparty’ in the comment section for an online delivery. Then, you have to have an obviously crippled party collect the pizza. The delivery person, if they read the comment, will be mortified and not say ANYTHING about it. It’s so good.