A Story on Growing Confidence and Pooping With the Door Open

How courage and confidence have become my priority for putting myself first.

The university I attended had a lot of inaccessibility. So much so that there was a group that started just to address it, I’m talking about basic ADA compliance. There’s a bathroom with only a single stall that when I go in, the wheelchair doesn’t even get all the way in and so the stall door won’t shut.

Once I had to go to the bathroom (a different one than mentioned above), and the larger stall was occupied. As an aside, I try not to get upset at people who use these stalls and don’t need to, because honestly, who would want to do business in the small tight stalls? Anyway, I really had to pee and ended up peeing my pants because of the stall being occupied. I even took the elevator to another floor and found the larger stall in use there as well. I took the next week to do my schooling from home to avoid this happening again.

When I came back to the university campus, my friend introduced me to a new way of thinking. It’s called “dude, who cares, do what you need to do.” In action, this translates to: when I have to pee, as long as I’m in the bathroom, I’m going to pee. I don’t need to go into a stall, I can just go next to a urinal, and if not that, then just face a wall or a corner. If I need to poop, I don’t need a big stall, I just need to get close enough to a toilet so I can transfer onto it.

Here’s the story, and not the only instance of this. I was at whole foods eating some food and waiting for a tow truck to pick up my brother’s car and we got hungry. As a human wont, I had to pee. On my way to the bathroom, the very kind security guard came running down the hall after me to give me a lot of help (more than I need, but I truly love people of this kind heart). He held open the door and was seemingly ready to do anything. He actually waited for me to finish so he could open the door for me on my way out and asked many times if I needed help with anything.

Here’s the thing, there were two stalls, one larger and one smaller, both occupied. Without hesitation, I go to the urinals to pee, wash my hands, and go back to finish eating. As soon as I get back to the table, I realize I need to poop. I usually can tell just like anyone else, but it’s hard to predict when I’ll have waited too long, and then I’ve reached the point of no return. This was a moment of no return, I had waited too long. I bolt back to the bathroom, hoping to avoid the security guard’s notice, and knowing that at this point, the best I can do is minimize the trouser attrition.

Naturally, the larger stall is taken, but I entirely do not care. I go into the smaller stall, the door doesn’t shut but I can get in. Facing the toilet, I 180 transferred while taking off my pants and released the Kraken. All the ruckus doubtless grabs the attention of the guy in the larger stall, who certainly feels poorly about himself (and I’m not without a shit tonne of resentment). I’m still on the toilet, (with my pants up at this point) when the guy gets out to wash his hands and I stare deep into his soul when he catches my glance in the mirror.

I finished up, washed my hands, went back to our table, finished my food, the tow truck came, we left to go to the broken down car, and I went home to shower.

The point is, I’m absolutely done letting anything get in my way when I need to do something, especially when the implications are trouser attrition. This requires a lot of confidence and courage, it’s harder to do at work where I’ll see these people day in and day out, but they won’t want to admit it happened any more than I’ll want it to happen. Ultimately, it’s a mindset and value change, it’s not easy to do, but necessary if you respect yourself.

Being Happy In A Wheelchair?!?

There’s being happy and being in a wheelchair, being happy despite being in a wheelchair, being happy to be in a wheelchair, and probably infinite ways to say it such that there’s a subtle difference.

Myself personally, I have only ever been happy despite being in a wheelchair. And that of course is important because at any point in time for anyones life, if held at gunpoint but most likely without much effort or threat, they can find something to be unhappy about. It’s quite easy actually. It’s naturally difficult to be happy. Did you just agree with that? Don’t believe everything you read or think. It’s actually natural and easy to be happy, but only because of the current state of the world is it actually hard.

With that said, my message is basically just a PSA. I’ve been happy and almost never depressed since and before being in a wheelchair. Usually when I do get depressed it’s nothing to do with a wheelchair but instead just the same questioning of life importance and greatness most of us experience.

I have NEVER been happy to be in a wheelchair. In fact, there hasn’t been a single day that I don’t absolutely hate it. I don’t let that hate ooze into the rest of my life. It’s compartmentalized.

I do not like it or any aspect of it. There has never been a moment I’ve been happy to not have motor function of my legs.

But I’m not unhappy overall.

End of message.

Very infrequently yours,

Cosmo

Thinking About What Accessibility Truly Means

I consider myself on the low end of accessibility because of everything I know I’m able to accomplish and have accomplished. Most of it with some help but a lot of it is just me figuring it out and using my strength and ingenuity. The larger part of it all is patience.

Although not everything is truly accessible by either ADA standards or just measured against me or someone more disabled being capable of independently doing it, that doesn’t mean it’s wholly impossible. But that implies time, effort and willingness.

At my university (Michigan Tech), there are a lot of things on campus that make it inaccessible by both measures (ADA compliance and general standards). I encountered this and thought of this when I went to go to a class and couldn’t get there because an elevator was down.

There is a building that is near completely inaccessible except that it’s connected to another building and between them is an elevator. Technically this makes that building accessible. However, it is very inconvenient. Which is my point here being that accessibility is also largely a matter of convenience.

These buildings have 6 floors technically. The first floor for each building (connected) are separated by about 6 stairs, so I go in one building and take the elevator down a few steps to get to the first floor of the other building and that’s the only way to get to those floors. I also am about sure that the only bathrooms are in one building meaning that while I’m studying in one building I’d have to take the elevator down a few steps to get to the bathroom.

One day, while on my way to my favorite study room, the elevators were down. This also meant that my class on the 3rd floor of the building with the offset was completely off the table as for going. Knowing my campus, there actually is a way to get to this room still. I could go in the library and up to that second floor, over a bridge connecting to the building where I study and then to my room which is on the second floor. However, though this is technically accessible, it’s really not.

My point in case is that convenience is what makes good accessibility. I could technically get up a set of stairs as long as there’s a sturdy hand rail. But installing a sturdy handrail doesn’t make a building accessible!

There’s another point here which is that there’s a building with doors hard to open, but it’s connected to another one that has button on the door. Technically, again, this makes it ADA accessible but I really don’t think so because you have to walk through an entire building and up a slant and through some fire doors (which don’t have buttons).

This is most likely the case everywhere. And although I hate having expectations like this, because I believe it’s my duty to adapt, I also would like to see some very simple considerations (such as having connected building with floor 1 level with floor 1).

Thoughts on Discretion

I was going to write about diapers, but then as I wrote this in my head, I found a larger topic to discuss. Here are my thoughts on discretion.

The main issue anyone will encounter when going to the store and buying diapers as an adult is their ego. The issue that anyone who sees you will have is trying to be polite and pretend they don’t see you buying diapers. Or anything categorically personal. 

When I’m going to the bathroom and using a catheter, I don’t exactly try to hide it. I’m not sneaking coke into the library bathroom, I’m just going pee. The more I try to be secretive, the more people’s interest will peak. I also don’t hold it up, explain what it is and have the world know my business. 

The way I go about it is textbook casual. Part of it is realizing that the other person truly, honestly, with all their heart, does not care. For them, it can range from noticing your attempts at extreme discretion and maybe talking or thinking about it before they lapse back to themselves, or if you’re too open, and maybe tell too much to the cashier about why you need diapers and then their image of you is probably tainted with knowledge they well could’ve died happy without attaining. Those are the extremes, but if you find the sweet spot, people will probably not notice and even if they do, they’ll only register what’s happening for the moments they’re noticing and then go back to their world.

I don’t small talk it – buying diapers or using a catheter – I don’t hide it either, but I do keep it out of sight. I’m discrete as much as is necessary to give respect to people who don’t want to see a bag of pee. That would be overly casual and ignorant. About the same as a grown man pulling his pants all the way down at the urinal. 

It’s nothing worth talking about or hiding, but it’s personal enough to be discrete by classical social standards. 

And if you’re wondering about when or why I use diapers, that’s coming next.

How People With Disabilities Can Get Into Any American National Park for Free

I was with my girlfriend, going to the grand Canyon National Park and she saw a sign about this, asked about it and this is what we were told.

Any U.S. Citizen or permanent resident with a disability gets a FREE LIFETIME PASS to all national parks.

This is usually $80 per 12months.

You also get half off camping and you get to drive down shuttle-only roads with some accessible parking being available.

This is amazing. You may be able to find this online, but if you happen to be near a national park, you could go there and inquire.

Stop Expecting Things to Be Perfect and Adapt

I myself fall prey to thinking I’m the center of the universe. It sure seems like it most days. What am I saying here? Why not expect things to be perfect? 

A long time ago, I saw some people complaining over some very little things, people in wheelchairs. Once someone in a wheelchair wanted to relate with me about hating how floors are uneven. Yes, I do get annoyed at times, but I don’t expect every floor to be level just for me. Some people were talking about how men’s boxer underwear can ride up, or about shoes falling off. Having a disability isn’t a right to raise expectations and accommodations. Yes, it’s nice to have accommodations, a really nice thing but it’s not global. 

Instead of expecting things to be accessible, I expect myself to be adaptable. The truth is that disabilities are minorities, there is no reason for a hill to be leveled for the likes of me. and I quite like hills anyway. accommodations cost extra money. I am not normal. Some people may want to say they’re normal, but they aren’t. I’m not standing and most of the world’s infrastructure is designed for people who are normal. I’m in their world and fortunate enough that they care about me a little bit and help out. 

The point being, stop complaining and wanting things to be tailored to you. Actually, there are a crazy amount of wheelchair-specific things and accommodations for disabilities and that’s more of a reason to just adapt to an uneven floor.

A Quick Guide to Traveling in a Wheelchair

Disclaimer: This is mainly for America, even though I’ve been abroad and the process is similar, I’m only certain about American commercial flights.

1. Where to begin when flying in a wheelchair?

 When going through the checkout process for buying airline tickets online, depending on the company, there will be an area within passenger information and you can select something along the lines of that you’re in need of assistance, in a wheelchair, and can’t stand up, etc. This feature is typically very hard to find and not entirely necessary. So, begin by buying your ticket as anyone would.

2. What to do at the airport?

 2.1 How to check in and make sure you get the assistance needed?

 This is what I do: I get there early, 2+ hours for any airport the size of Detroit or larger. Before I go through security there are front desks where people are checking luggage, making flight changes and getting their flight tickets. Go to one of these people (wait in line if you must), and give them your passport, ID or ticket information (if you have it through an app or printed from home). Once they know your flight, tell them you’ll need assistance. What I say is, “I’ll need an aisle chair at the gate, my chair is manual and has no batteries, I can’t stand up or walk.” They need to know what kind of chair you have because of the rules for lithium batteries, they need to know you can’t walk because some people can walk but need to be pushed in a wheelchair to get to their gate but not all the way to their seat. The aisle chair at the gate is how you’ll get into the plane.

 2.2 What to do with medical supplies luggage?

 If you have luggage and its medical supplies (or related to wheelchair stuff), it should be free of charge to check it at the check in counter where we are in 2.1. Beware of doing this because there is no insurance or liability on the airline’s side if they lose or damage anything. Always have extra medical supplies with you in case the luggage is lost or broken. Keep higher value/fragile items with you, most airlines should allow extra carry-on items that are medical supplies (I’ve never had a problem).  

 2.3 How it works going through TSA in a wheelchair

 I have TSA precheck and I recommend it. With TSA precheck, you go through a shorter line, they usually don’t require you to take off much, or anything. You will get up to the body scanner, the person there will tell you to go to the side, they call someone else who hopefully comes soon, they bring you through a gate, they swab your hands and parts of your wheelchair, take it back to test it and if it comes back good, you’re good. One person once told me that they went through a yard with fertilizer and it caused the TSA swab to alarm (chemical stuff), so make sure not to do that. 

Without TSA precheck, the process is similar, you still typically don’t have to take anything off until you get brought through the gate next to the body scanner. There a TSA agent will ask you to do some things, but remember that you are allowed to tell them “I can’t do that” if it’s a large struggle, and they may help you or do it for you if they really need it done (think like taking off your shoes). Instead of a quick way, they’ll pat you down, you’ll have to lift yourself up or get lifted as they pat down your seat and your butt. You can get help for any part of this. 

 2.4 What to do at your flight gate?

 Once you get past security, find your flight gate. If you get there too early, no one or people for a previous flight will be there. Once an employee for the airline is at the gate and they’re working for your flight, go up to them and tell them almost the exact thing you told the employee at the check in desk. You’re the one who needs an aisle chair, you can’t stand/walk, you have a manual wheelchair (or not) and you’re going to gate check your wheelchair and will need the chair and an aisle chair at the gate when you land. The great thing here is that you will board the flight absolutely first unless there’s another wheelchair. Otherwise, you are very very first.

 2.5 How to board the plane?

 Watch my video! You meet the people who have the aisle chair, tell them your seat number, give them any bags to help you with and go down the walkway to get to the airplane entrance. You’ll transfer into the aisle chair. While you’re there, take your wheelchair apart. You want to take off everything except the big wheels. Take all the rest with you – backrest, armrest, side panels, cushion, etc. Fold the chair down and they’ll take it away and take you on the plane. If you have an extra bag or room in your bag, it helps to shove everything in there, but keep the cushion out because you’ll sit on it. It’ll be a bit of a bumpy ride so I usually lift my butt off the seat using the aisle chair armrests. 

 2.6 How to get off the plane

 Unfortunately, you get off the plane very last. I find that nice, I never liked awkwardly standing in line and slowly pushing my way up. Relax, read a book, talk to someone, and when the people with the aisle chair come, transfer on and just outside the plane, there will be your chair (hopefully intact). Put all the pieces back on, get on, and go out to your adventure!

There it is, in two steps. 

Why I Wont Do Things I Could (In a Wheelchair)

I could very well do a lot of things, unlike in the far past, nearly everthing today is accessible. It may cost more, but if you’re determined, you can do it. I know of a man who can’t move his arms and can barely stand up (ALS), yet he hunts.

This is something I’m hoping people who are friends/family of someone in a wheelchair can read and understand.
My family encourages me to do things, I say no, they get upset. They think that I’m allowing a wheelchair to hold me back from donig things I want to do. While that is party true, it is only true in a very small, specific way. Yes, being in a wheelchair or having some disability creates a barrier that I sometimes just don’t care to put forth the effort to overcome, but the reason I don’t care to put in the extra effort is that I just don’t care to do whatever it is.

If I did care about doing something, I would do it and don’t forget, I have cared about doing things. In the gym, I have contrived of great ways to do workouts. When I was in Australia (first of all, I went to Australia alone) I wanted to go skydiving and despite the few friends I had not wanting to, I still managed to get on a ferry, go to an island, and jump out of that plane. Even on the way back, getting off the ferry, the exit was up a flight of stairs, so I managed to get help up the stairs, continue into town and find my way back via public transportation.

Here is the short list of why I sometimes won’t do things:
1. I didn’t do it before my injury.
2. I don’t want to do it enough for the cost or extra effort.
3. The accessible way doesn’t interest me.
4. I’d rather focus on other things.

I explained mostly the second one. The first one has a simple logic, I didn’t play a certain sport before I got injured and just because it’s a special thing for me to do now, it doesn’t make me want to do it anymore than before my injury not too long ago. I lifted weights and competed in bodybuilding before I got injured and here I am doing the same post-injury.

The extra cost. Nearly everything, perhaps literally everything, accessible will cost more money and in most cases more time and effort. I value all three, and I like to use all three as a way to advance myself into what I define as a successful life. Many successful people, imagine Bill Gates, don’t do everything. Actually, nearly all successful people say no to enarly everything and focus on a very few things. I have been fortunate enough to have that mindset bestowed upon me, eliminating distravtions that before were all to easy to affect me. Of course, I still enjoy having fun, which is why I went skiing last winter and why I’d still like to go on a 4×4, jetski or snowmibiling (which actually have little to no extra cost for being accessible for me). This also is part of the fourth reason, for me to focus on other things.

The biggest reasoning for me is the third listed above. I love playing sand volleyball, I’m not all too good but a day at the beach with friends, music, grilled burgers and playing beach volleyball has always been considered a great time. Sure, I could probably continue to play sand or hard floor volleyball, and yeah I could get a track chair and go for a walk on the beach, but I won’t. I like sand volleyball for how I used to do it, not for it in and of itself. I want to do it the way I used to or not at all because I only find it enjoyable for what it was. Not many things are like this for me, however, the reasoning for anyone to do anything is because they like to or want to do something in the way they enjoy.

In What Way to Accept Being Disabled

A fair amount of people struggle to accept being in a wheelchair. It’s possible to not like it yet accept it simultaneously. Naturally, I hate it entirely but that doesn’t keep me from being happy, living a great life and doing what I want. I’m here, now.

I was at the zoo with a some friends, they had a kid that was old enough to walk around but young enough that they brought a stroller for her. She ended up not using the stroller at all. Throughout the time we were at the zoo, and struggling to get the stroller around, the mother was poking some passive aggressive things towards the father about how she knew they didn’t need it and so on. The father argued back a little bit, that they might’ve needed it and so on. A typical argument you may have when the wrong decision was made and one person was right. What I couldn’t understand during all this was that they were both intelligent, well read in philosophy, and a virtuous couple. All the while, the stroller was still there and ultimately no good came from their bickering.

Remember this: the stroller is here, now. You are here, now. That won’t change, now.

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