What If…

A few days ago I was eating breakfast at my parents house in the 253 (Tacoma, WA area) before I got in my car and headed back to the Portland, Oregon. My dad, he is a republican and has this tendency to bring up conversations that you don’t want to really be part of. He also has an issue with people playing sports, in America, not standing for the national anthem so let me write a few things down, in no particular order, before I get onto the topic of way I started this post in the first place.

The first time the National Anthem was played at a public sports event was during the 1918 World Series held by the Major League Baseball. According to a quick Google search Major League Baseball was established in 1869. So not taking the mouths into account, just doing basic math, that’s 49 years without singing or even standing for the National Anthem. It was only sang by the military two years prior in 1916 under the order of President Woodrow Wilson.

Jackie Robinson, the first black athlete of the MLB didn’t play under the MLB until the year 1947. So doing basic math again, that’s 29 years that we sang the National Anthem before black dudes were able to play on the same field as white dudes. On a side note, the Negro National League was established in 1920, so that was 27 years before he was allowed to go over there.

By reading an article from ESPN, it sounds to me like the National Anthem stuck around because of the fact that it drew a larger crowd. So if you’re like me you’re asking yourself is it because people liked it, singing a song that made people feel unified; or is it because the MLB wanted more money due to ticket sales?

Since I’m doing this, the NFL was founded in 1920 in the state of Ohio.

Onto another point which will lead into my main point…

I’m part of a group on Facebook where all its members listen to the same podcast out of Seattle. Most of these members are from the Seattle area, and by the Seattle area I’m talking about a 50 mile radius around the city of. Some of the other members used to live Washington but since then moved away to other states such as Nebraska, like I used to; Iowa, Arkansas, Oregon, California, Arizona, Nevada, so on and so forth. The ongoing motto of the podcast is to ‘stay positive’ and we all seem to not only joke around and have fun, but show support for other members regardless of political or religious differences, and this environment creates very few arguments.

A few days ago, one of the most known members of this group shared an article from Sports Illustrated about how Michael Bennett of the Seattle Seahawks did not stand for the National Anthem. This post has generated 67 comments over the span of 3 days, many of those comments having subcomments. I even have a few comments on said post, and even though I was not trying to fight with anyone; it just…there was a reason to even though I think I stayed pretty neutral.

So let’s jump back, or forward, to eating breakfast at my parents house, I got into a discussion with my dad; my family always yells at one another even if we are not fighting. From the conversation I found out that my parents also have arguments with my dad’s sister-in-law; the wife of one of his two brothers, or two of his three nephew’s; the three sons of one of my dads five sisters. I found this out just based on hearing my mom say, “Just shut up Bill, you’re talking to a brick wall; it’s just going to be like talking to Dan or Becky.”

These family members are from Nebraska and never lived outside of the Midwest, they never lived in parts of the country that tend to be more democratic based on population size and how different one person is than the other and the idea that you have to learn how to coexist on a rock that is floating, in a pattern, though space.

My dad thinks that our current President, Donald Trump, is a fucking idiot; well hey, I do too! Even though he is a republican he is more moderate than he may think, he is not one of those 33% that live in the Midwest and thinks everything Donald Trump does is a gift from God.

At one point during the fight I got my dad to say, even though he kinda disagreed with me, “Yes, he has that right, and I will fight for that right,” my dad used to be a Marine, “But I still think it is disrespectful. But you’re right Daniel, I would not want to live in a country that forced its citizen to sit or stand.”

My mom thought me and my dad were fighting, but no, we were just yelling at one another. We didn’t really start fighting until he asked me, “Why did he sit, what was his reasoning?”

I quickly, without a thought, replied by saying, “He sat due to something that he thinks is a injustice, the mistreatment of black people.”

From there the conversation kinda ended, I kept saying “Okay,” at one point just to avoid a fight.

I get my use of metaphors from my dad and for whatever fucking reason he was comparing black people to tigers saying, “You’re right, police need to be better but at the same time I can’t really blame them; when you deal with tigers attacking people everyday and then you find a tiger you’re going to be on edge expecting it to attack you.”

This is kinda where I zoned out and started saying, “Okay.”

My mom ended the conversation when I said, “God dammit dad, he didn’t approach a tiger, he approached a god damn domesticated house cat who told the officer that he was getting his wallet out of his back pocket; and he fucking got shot!”

So with the idea of this posting on Facebook and the conversation that I just had with my dad, on top of the conversation that I had last week I ended up with a thought in my head as I was driving south on I-5.

“What if I didn’t stand for the National Anthem? Would it be assumed that I can’t because I’m in a wheelchair? How would they know that I was choosing not to stand, is it just because they assume that I can’t? What if I wanted to raise awareness because people who are physically disabled have a extremely difficult time finding employment. What if? Would people even be talking about it?”

We have laws in place, I know this, a place of employment can not legally discriminate against me, but you know what? It happens! Do a large majority of people believe me when I tell them that finding a job when you’re physically disabled is extremely difficult? No.

All of the discrimination is unintentional, it’s not like the hiring manager is going around and telling me I’m less then a human because I’m in a wheelchair.

But guess what employers? We feel that way even though you don’t have any intention of doing so, and maybe you do, maybe you are an asshole; but there are ways around that law, some of you know this and you are an asshole, some of you just say no based on this or that but either way you still make handicapped people feel pretty god damn useless.

So because of the idea that I can’t speak on your perspective, lets throw myself under the buss.

In high school, even though I could walk at the time, I was still disabled; my disability is not going away. Unless they come out with a cure, which they were supposed to happen ten years ago. Regardless I was in a wheelchair at that time and my education was based on the field of science and technology, engineering to be more specific.

During my sophomore year of high school I took a drafting class, that as you would expect started out using things like pencils, paper, table, t-squares, triangles, scales, eraser shields, so on and so forth. That then moved into AutoCAD. In my junior year I moved high schools and more or less ended up taking the same class with a different name. For my senior year of high school I could not take the same class over again, so I more or less ended up being a teachers assistant in the same class that I took the year prior.

At one point I got yelled at by my teacher saying, “You’re supposed to be helping these kids, not doing their work for them.” I’m sorry, most of these kids were taking this class because, “It’s an easy A man,” and when you’re trying to explain to a kid to type ‘@34.25<270’ and they act like you’re talking a foreign language it’s easy to just be like “Here, I’ll show you,” but then you get trapped in a moment of, “I’ll just do it for you, because I don’t want to get pissed because you can’t.”

After graduation I went to college and obtained my Associates in Mechanical Engineering Design. I spent two and a half years in a land of…taking my son to daycare, going to school where I studied mechanical blueprints, trig, geometry, physics; for 8 hours a day, picking my kid up from daycare, and then being yelled at my his mom.

I have extensive knowledge in blueprint design, I can’t necessarily tell you how to build a bridge that is supposed to hold 100 tons, and I might have to brush up if you ask me, “If I have a truck that weights 2,000 pounds and is going 40 miles per hour up a hill with friction and a 35% incline and I’m towing a 2,000 pound boat how much will it slow me down and how long will it take for me to get to the top of the hill that is in another 50 feet.”

After that I started a job that was not an engineering type job, but was related in the field of such and gave me experience in the manufacturing/production environment. I held onto that job for 5 years before I was transferred to Seattle and realized that the drive was too much and I could not do it anymore.

While I was employed at that job I went to school…again, got my second Associates in Machining and Manufacturing Technologies, my main goal of getting that degree was to become a CNC Programmer, but then you got the idea that the vast majority of employers will not hire a CNC programmer if said person was not a CNC operator beforehand. That was the beginning of my downfall with that company, I more or less started a job that I could not physically do at the speed that they were asking, and they kept asking me to speed up so much that I got into this mode of doing stupid shit, scraping parts, and asking a ton of questions that I already knew.

And my walking has became worse since that point in time, so while I may not be able to run the machine I can tell you how to setup the machine, load the program, set the Z, set the offset, how to takedown, and I can even tell you what N76G01Z-0.625F1 means.

But does that matter to employers? No. Because my job as a CNC operator was a failure, why? I don’t know if they care. On paper they see this, they don’t care if I know how to program the part being made, the history tells them differently. And I don’t want a job in CNC anything, I’ve done that before, don’t want to do it again.

I’d rather produce a 3D model based on a customers 2D blueprint and hand it to the machinist and say, “Make this shit.”

Then you got the idea that people make assumptions. And that is the downside of being in a wheelchair. You don’t know what I can or can not do, and it’s illegal for you to even ask.

Part of me blames America too, where the fuck do you get the idea that I’m going to sue your company because I fell down or whatever? Oh yea, people do that; but I’m not an asshole. Do you know that? If you give me a job and I stand up with the idea that I might fall over and I do fall over, that is on me, it’s my fault. Now, I’ll sue you if you made me stand up, but if I could do the job without standing up, and I make the personal decision to stand up; I’m not going to sue you because I made the choice to and fell down.

But does it happen? Yes, people sue people over stupid shit all the time. Look at out president, cough cough.

The thing that pisses me off about that is…the negative stereotype plays a lot into your assumption. And while you sit there making assumptions about things that you don’t know or even understand; I’m sitting here being depressed day in and day out because you’re not the only one making those assumptions, everyone else is too. While you sit there I’m taking money out of your pocket, and sure you could sit there and say, “You fucking lazy bastard, stop taking my tax money,” but that’s your fault, it’s your fault that your paying me just to live.

It’s not like I’m not trying to find a job, it’s that all you fuckers make assumption that…you can’t legally make, but can you? And do you? You can make up reasons not to hire someone, sometimes you don’t even need to make shit up. There are a lot, a lot of jobs that I can’t physically do, I get that, but I’m not trying to apply as a patrol officer either.

You’re legally supposed to provide accommodations, but that is a slippery slope and I don’t think people understand that. A chair, fine, if you have to spend $20 on a chair so I can sit, fine you figure I can make that money back within X amount of time. But if you assume, and what happens when you assume? You make an ass out of you and me. When you assume that you need to spend more then it costs to employ me, you wont employ me. And we come back to the negative stereotype that surrounds people in wheelchairs.

Do you know me? Do you know what I can do? Oh that’s right, you can’t ask.

After that job I was giving an under the job table helping my dad. At that time my father was the senior design engineer at a company in Nebraska, and that is why I moved back to Nebraska in the first place. My dad did not know how to use Solidworks, but he knew that I did, he also knew my educational background; based upon that he gave me a job that I could do from home, a job that I could start at three in the afternoon and do until four in the morning if I wanted to.

I talked about this in a previous post, but to summarize it I moved back to Nebraska to take a job at said company. My dad only took the job because they promised to give me a job. By the time I moved back the government shutdown was in high gear, the job never happened, and every time my dad mentioned my name to his boss, he boss would straight up walk away and act like I didn’t exist.

And that is why my dad quit his job and moved back to Washington State to take his old job.

But when he moved we had reason to stay, so we more or less end up staying in Nebraska for another three years. During that time I was lucky and found a job, that hired me after saying that they wouldn’t.

When I started working there I’ve heard a few times that I did a good job and they were happy that they gave me a job, which to be honest only made me feel like I was negatively stereotyped during my initial interview.

I kept that job for a year and a half before I was laid off due to a loss in customer base. During my employment there I ended up turning 2D blueprints into 3D models and then doing the reverse.

I spent my life focused on this, mainly because I knew I had to get a job that I could do from a desk. But the vast majority of the time, these people have worked on the floor for several years. Can I work on the production floor? Then we get back to my first job. Can I work on the floor? Yea, depending on the job. Do you assume that I can work on the floor? Most manufacturing jobs would make you assume that I can’t. Sadly, a lot of them are set up that way and they don’t even bother to ask if they could provide reasonable accommodations unless I have a golden penis that cums one hundred dollar bills.

After I got laid off from my last job…we were planning on moving to Oregon the year before, and due to her job and my job, the decision to stay in Nebraska was made about two weeks prior to me finding out that I was laid off.

So I found myself staying in Nebraska for another year without a job. At this point, I knew from previous occasions how hard it was to find a job. What do I do? I call social security to go back onto disability, and that, that was the most stressful month of my life. I didn’t know if I was going to receive money again by the time my rent was due. I didn’t get any word from anyone about anything. I just sat there worried until money popped into my account without any notification.

I was trying to find a job. Under the rules of Social Security I can work part time for under X amount of money per month, in gross pay, and Social Security still gives me something.

But are you aware how hard it is to find a job, yet alone a part time job when people assume you can’t physically do the job that you’re applying for?

I lived in Lincoln, NE at the time so let assume that there are 250,000 jobs and at the time the unemployment rate was 4.8%, so by doing simple math 12,000 jobs. If you figure that half of those jobs are part-time that take your 12,000 down to 6,000. Then you take into account that I can’t work fast food, I can’t stock shelf’s, I have no customer experience experience, what can I do? That takes the number 6,000 down to about 600. Then you got to account for all the people that can either physically do shit or have better qualifications.

Do you know how much Social Security Disability pays? Do you even care? I assume it’s different for everyone. Let’s assume that you have a full time job that pays you $11.87 an hour, sounds good right, a gross pay of $1,900 a mouth; not great, but that is livable for most poor people; and fuck, there are a lot of poor people in this country. If your monthly gross is $1,900 your take home pay is roughly $1,463; that goes to say that every other Friday you’re taking home $731.50.

Now take that number and instead of getting it every 15 days, you get it every 30 days. How the fuck are you supposed to live on that? Now of days a good 95% of the apartments charge rent over $731.50, so I can’t even pay rent; much less car insurance, car payment, gas for said car, cell phone; what do you expect me to do, get a land line…it’s 2017 people.

So, I need a job, I want a job, do you know how depressing it is to sit here and eat food, go to the store, play Fallout 4, or write a 3,365+ word blog post? I want to feel like I’m contributing to society somehow. Not only that, but fuck, I don’t want to live with my fiances parents either.

That’s easy Dan, change career paths. It’s not that easy! What the hell do I do? My life is surrounded around the idea of engineering, and yes; there are more things I can learn, but still. It’s not like I’m going to take a job that I can’t even do.

So if I was in the situation where millions of people could witness me sit down for the national anthem is it okay just because you assume that I can’t stand? If I made the choice to sit would you know that I’m sitting based on the fact that I’m already sitting and you assume that I can’t stand?

If I wanted to use that as a vehicle to raise awareness to an issue that I deem is an injustice would people even be talking about it?

I used this metaphor once, and I’m going to use it again. That’s the problem Colin Kaepernick is dealing with; it’s like he used a 1998 Toyota Super as a vehicle to raise awareness about how cars don’t get enough gas mileage, and the vehicle worked; it made people all around the country talk. But a year later people are still fighting over the type of vehicle that he used and instead of getting engineers involved to figure out how to reduce gas mileage you got a bunch of people arguing about muscle cars, SUVs, trucks, vans; and why that vehicle is better. Everyone, or most, forgot what the fucking issue was about.

So if I sit during the National Anthem would people care? Would they make an issue about it?

Disabled people, in 1990 the A.D.A. was formed and did a lot to protect us, but does it do enough? There are ways to get around it, and employers use them all the time rather they intend to or not. Discrimination against disabled people happens everyday, might even happen right in front of your face; and you don’t even know.

Perspective; when is the last time you saw someone and thought, “I wonder what their life is like, and if I was faced with the same issues could I overcome it?”

I’ll end this post by asking a very basic question. In this country we have the 1st amendment; that being said we have the freedom to sit or stand for the flag and that same freedom grantees that no one is going to force you do to what they think you should do. Some people might say, “Yea, well standing for the flag is a sign of respect.” You know what, you’re right; but at the same time exercising your right to make a choice on the matter, is also a sign of respect.

Sit or stand, I don’t care, do whatever makes you happy; but think about what you’re saying before you say, “That’s disrespectful.” Is it?

You have that freedom, is it not respect to choose either of the two based on the fact that “they” gave you the freedom do make that choice?

 

 

 

 

 

Your Handicapped Perspective of the Day

Yesterday I went to the store to buy my fiance a card and roses; partly because it was sweet just to do it, and partly because I needed to offer an apology for the events that took place the night before.

At this point you might say, “What did you do?” It does not matter, it’s not the point of this post; but just to satisfy your curiosity I got too drunk and ended up throwing up on the carpet.

I’m one of those people in a wheelchair who actually goes outside and does shit. Like I’m known do to. I went to the store and after picking out what I wanted to buy I realized that I left my wallet at home, so I put the items on hold to go home and get my wallet.

Which more or less means that I already put my wheelchair in my car, but now I got to transfer it two more times then I wanted to. So at this point I would have to put in/take out my wheelchair a total of six times.

Can I do it? Yes? I don’t mind doing it. The only reason I don’t want to is because it adds about 20 minutes to my trip that was not supposed to take that long in the first place.

It was a nice day yesterday in southeast Nebraska. Sunny and warm, but not that humid; kind of reminded me of Washington Summer’s in a weird way. When I came home to get my wallet I had the task of getting out of my driver seat, using the side of the car to help me walk to the trunk, taking my wheelchair out and assembling it, going up the ramp into my house; and by the time I got my wallet I had to do all of those steps in the reverse order.

I get home, I got to the back of my car, took out and assembled my chair. Just as I sat in my chair and wheeled myself over to the ramp that takes me to the front door of my house and I hear, “Do you need any help sir,” to which I said, “No.”

This guy sounded like he was offended that I said, “No.” Look man, I’m doing something that I do many times a day. If I had that much trouble getting into my own house don’t you think I would live somewhere else?

I’m very active, as far as someone in a manual wheelchair is considered. I hear, “Do you need any help,” more times in a week than most people do in a year.

I understand that you want to be nice, as part of me appreciates that you want to be nice. The other part of me however hears that so much that it gets annoying and makes me think that you’re someone who assumes that those of us in wheelchairs are not independent and clearly can’t do anything by ourself’s.

I do this many times a day, I don’t need your help; and for you to assume that I need help with one of the simplest tasks that I do on a daily basis just makes me think that you’re an asshole who just wants to feel better.

Don’t you think if I needed help I’d be like, “Hey, can you help me please,” versus just getting unprovoked help that might not be needed in the first place?

That’s like me being somewhere and asking you if you need help walking. The first time it happens you might just think they’re weird for asking such an odd question, in my case you might even expect it; but being asked that multiple times a day is rather annoying.

If I needed help I’d ask. I much rather ask then having people assume.

I Feel Like Writing!

I’m the type of person who does not care if my friends use my wheelchair if I’m not.

Back in high school I was in yearbook production, I could also walk; it was not able to walk like most people think of walking, but nonetheless I was able to get myself from point A to B and back again without using my wheelchair.

One day I’m sitting at the computer using Photoshop to design one of the junior pages. I was not in my wheelchair, I was in the nice “school version” of an office chair because I deemed it more comfortable.

My friend Lance had to go interview someone, about something, and said, “Hey bro, can I use your pimp ride?” Which I didn’t care, “Yea man, whatever, just don’t be trying to go down a set of stairs or whatever.”

About 30 minutes later he came back to class and said, “Man, how do you guys do this, my arms hurt.”

About two weeks after that I was staying after school to work on the yearbook and Lance was with me, a few other students, and the teacher. School was pretty empty at this point, and once again I was not sitting in my wheelchair. When I had to go to the bathroom I decided I would just walk there.

For some reason the bathrooms are locked after school, which I didn’t know at the time; by the time I walked 50 feet in one direction, 150 feet in the other direction, and another 1,000 feet that same direction to end up going to the bathroom to just walk 1,150 feet back to class I opened the door to say, “Man, how do you guys walk, my legs hurt.”

And this leads into my topic.

My mom, who didn’t show signs of our disability until 1973 or 1974; at the age of 18, just got a manual wheelchair. Before that she was using a cane or one of those walkers with wheels on them. She was still able to walk, and still is; but as time goes on it is slowly deteriorating and you can tell she is having a harder time doing so.

Me on the other hand didn’t walk until I was 3 and pretty much had a wheelchair my whole life, 33 years later I’m on my fifth wheelchair and due to how active I am I see myself needing another one sometime around the age of 40.

I was able to walk in the past, but it was…different. I can still walk I suppose, but I need assistance with every step. Back when I was able to run, jump, and skip I still had a wheelchair even though I rarely used it. Around the age of 16 when I entered high school I more or less started using my wheelchair when I was away from home.

I had many years since then to figure out shit that most people don’t know how to do. Wheelie’s, opening doors, getting into my car, and toning my muscles to take me places.

So now my mom is asking me, “How do you open doors?” I can tell her, “You go up to the door until you can’t go any further, then put one hand on the door handle and keep your other hand on the wheel, roll backwards as fast as you car and swing the door open. Then take that arm that you were holding the door open with and use it to catch the door as is closes, use the door and your one arm to move though the door.” Or, “Go up to the door, crack it open, and slowly run into it until it opens to the point that allows you to push yourself though the door.”

But, I don’t know how much she will understand that. She has never done it before. It’s kinda like explaining how to swim when you only know how to stand in a pool.

And she doesn’t have the same arm tone that I do. I can go 500 yards on a sidewalk and not be tired, but I don’t know if she can; and hills, come on man, I can get up a 30 degree incline and understand the physics of weight changes and whatnot. I can even do the same thing on grass based on the fact that I know how to do a wheelie.

But she does not. Part of me wants to call her and say, “You need to go to the mall and just cruise, get your arm strength up.” Then going up a hill, I don’t know if she’ll be able to navigate that without falling backwards because she doesn’t know any better.

Then going down a hill, seems easy, but that too requires knowledge of how to stop, how to steer your chair at a fast rate of speed, and how to control each wheel if you lose traction. The breaks won’t do shit in that case, they might burn your hands and cause you to crash into whatever you’re not steering away from.

Like, I’m not there. I can’t take her to the mall and give her wheelchair lessons. My dad is a motherfucking genius when it comes to physics, but I don’t know how much he can help either. I’m 1,600 miles away I just can’t be like, “Do this,” and even when I do move to Oregon I’ll still be about 200 miles away.

Last night I told her, “Go to Youtube, that’s a good resource for almost anything that you want to know.”

I was on the phone with her when she said, “Boy, carpet is so much harder then wood.” Part of me felt good that she can finally grasp that understanding, and part of me was like “Well no shit.”

Should I Be Mad?

This story may take turns, chances are – like most of my posts – they have improper grammar due to the fact that I’m really bad at editing myself. I’m writing this without any preparation – yet again like the mass majority of my posts. If I’m talking about one thing but then the drunken train conductor derails the train into another topic, don’t be surprised.

As you might know I was born with a physical disability that is rare and hereditary in nature. My disability is known as, or called, Hereditary Spastic Paraplegia or otherwise referred to as HSP.

My mom gave the disability to me, her mom gave it to her, I gave it to my son. My uncle, her brother, also had it. I don’t know much about how my uncle was effected, but what little I did see him he was better than I was but worse of then my mom; he was able to walk like I could when I was around the age of 23, couldn’t walk without support but seemed to have the energy to do so. My mom used to play basketball in high school, she did not show any signs of our disability until she was 18 years old.

Me on the other hand showed it as soon as I started walking, maybe even before then. I took my first step at the age of 11 months, but I fell down right away and gave up. It was kind of like I said, “Fuck that shit, I’m not doing that again.” But I did, I started walking on a regular basis sometime around the age of 3.

My disability has the nature of getting worse over time, that being said I used to be able to walk and now I can’t walk without assistance. Those of us born with the disability are theorized to plateau at some unknown point in life. I can still drive a car with the use of my feet. Even when I could walk you could look at me and say, “That kid walks funny.” It was not easy to hide the fact that I was physically disabled, in fact it was almost impossible unless I sat in a chair my entire life.

If you did not catch on by now, everyone who has my disability is effected differently, while the University of Michigan is doing studies and found the particular gene in the DNA strain; everyone is effected differently and it is almost impossible to distinguish how person A is effected differently than person B without physically having communication with said people.

My son is currently 13 years old, his mom broke up with me when he was around the age of 3. After breaking up with me she got married to someone in the military and from that my son spent the last 9 years moving from Washington State, up to Alaska, down to Texas, over to Florida, and when he was 12 they moved back to Washington State due to his step-father getting a job offer in Seattle.

Last time I saw my kid was July of 2016 when my aunt took me with her to Washington State as a way of her visiting her sister; my mom. Both of her sisters do not have our disability.

From what I can tell, my son, who has my disability according to the University of Michigan, does not show signs of our disability. He does, but you would not know it at first glance. You’d have to wait until he was tired of walking, or just tired in general. I remember being at Mt. Rainier watching my kid walk towards the bathroom, I was not really able to see anything other than a very minor angular change of his foot when he steps forward with said leg.

So this is where the story breaks off into another direction.

A few weeks ago I was on Facebook and saw one my sisters posts, in said post she used the word retarded as a way of explaining her and her friend hanging out and being stupid. From there came comments that were trying to correct her on using such word in said fashion. I go onto leave a comment that said something along the lines of, I can’t find the post anymore…she deleted it. I said something to the effect of…

I think of it as someone calling me a cripple.

Over the years I’ve learned how to poke fun at myself.

Unless it’s me using the word against myself, or a close friend using the word towards me in a humorous fashion; it’s offensive. I would not call you a cripple due to the fact that you might be offended by that, and even then…that is not the correct way to describe an individual with a physical disability.

Later that night I was in the kitchen heating a pizza in the oven when my sister called and said, “Can you please delete that last comment that you made.” With a slightly confused look on my face that quickly turned into anger  I asked, “Why?”

“Because I don’t want anyone to know that I’m disabled.”

We got into a short fight afterwards and shorty after she said, “It’s not you decision to…” I hung up on her. Shortly after that I sent her a text message that said, “Don’t be afraid or who you are.” Which went straight into her asking, “Why did you hang up on me?” To which I said, “Because I was offended…”

My sister…we didn’t know that she had HSP until a blood test to try to find a cure was conducted, which is where the University of Michigan comes into play. My sister grew up showing no signs of said disability. She ran track, she was on the diving team, she did gymnastics in high school; she was a very active person. No one knew that she had it until we got word from the University of Michigan that told us otherwise. She didn’t show signs until she was….29, 30, 31; I don’t know.

It has been said that those who “develop” a disability much later in life have a much harder time coping with their new found lack of movement.

“I was offended…you’re more or less telling me in a round about way that you are ashamed that you are like your brother and that you just want to act like the whole thing does not exist.”

“No, it’s not like that at all; you just don’t have the right to tell my friends things about me that they don’t know.”

While I can agree with that, that does not mean that I was not offended. After thinking about it for the past few days I came to the conclusion that I’m jealous oh her.

Unlike her I was never able to hide the fact that I had a physical disability. I had a…difficult time as a kid. Other kids don’t fucking know, and they use your misfortune as a way to gain popularity among other kids who think the same thing. It took me a long time to figure out who I was, it took me a move to another state to understand that kids just make fun of you based on what they don’t know.

It took me awhile to understand that if you don’t give them the reaction that they are looking for (which is their fucked up way of gaining popularity) and you address, and explain, the elephant in the room people tend to be more inviting.

It took me a long time to understand this, and I’m currently in the state of mind where: Well fuck it, I am who I am; if you don’t like it, I’m not going to try to be someone I’m not.

Part of  me being targeted by bullies in school was because I gave them the reaction that they were looking for. I wanted to be popular, but at that time in my life I kept trying to be someone that I was not just because I thought people might like me if I was different. That has also taught me something about girls!

If you’re a dork and you like the color pink, or whatever it is; own that shit, be proud of it. Girls love confidence, if you like to  eat eggs with ketchup, fucking own that shit; don’t try to turn into someone you think she wants you to be, fucking be yourself and be proud of it! Don’t be an asshole, every relationship has it’s struggles which require compromise.

I’m just saying…if you like rap music, expand your musical tastes because she is a fan of heavy metal, don’t stop liking it because she doesn’t like it. However if she, I don’t know…stops having sex with you because you like rap; you might want to reevaluate the person that she is.

I have to understand that my sister is on a different life path, her perspective is not the same as mine. She grew up with me, in the same house, going to the same school; she saw what I went though. Or did she? She saw it, but I don’t think she fully understood it.

From my perspective hearing her tell me that was the same as, “I saw what you went though as a kid, and I don’t want that to happen to me, so I just going to Donald Trump this bitch and act like it doesn’t exist.”

Which makes me wonder, “If we were not related would she have been one of those who made fun of me in school?”

So, I understand that her perspective is different than mine, but I’m jealous that she got to do something that I was never able to do.

There are a lot of people that can do things that I can’t, I’m not jealous of them; they did not grow up with me, they do not have the same disability that I do, and they were not able to hide that disability for about a third of their life.

She has a hard time coming, and the longer she is afraid to tell people that she is disabled the harder it is going to be on her.

I understand not letting people know that you are disabled. There have been people I talked to online who have no idea that I’m disabled, I understand not letting people know. But the moment where you’re afraid to let yourself know is where my anger comes from.

Am I right for being mad at my sister for this particular issue?

How do I address it if she wants my advice? We are clearly looking at the same picture through two different pieces of glass. I can’t just look at her and say, “Shit happens, get used to it,” she wont see that the same way I do.

That’s like a mime trying to show you how to be a public speaker with the same audience.

Can You Be too Nice

I’ve been told many things by my father, he continues to tell me stuff all the time. As much as he says shit that makes me think, “Is my dad an asshole?” He also has many nuggets of wisdom he has dropped on me throughout the years, one of the things that had the most impact on me was, “You can lead a horse to water but you can’t force it to drink,” that has thought me that you can only do so much and if someone is not going to listen to you it’s going to be a waste of your time to try to get them to listen to something they don’t want to listen to.

Sometimes that person might even know that they should listen to you, but their emotions have tricked them to do the opposite. But this is not want this story is about, however I did mention a few times here and here if you care to read.

One of the things my dad had always told me was: “You can’t be mad at someone for what they don’t know.” But can you?

So I’m hanging out at home and Shannon gave me three things to do while she is at work: Do the dishes, fold the clothes, take out the trash, and “You can do laundry if you want to because it’s all in the bathroom.”

The first thing I do is listen to podcast while doing about a hour and a half worth of dishes. When I was done I used some of those clean dishes to have hot dogs and drink a Monster while watching part 8 of a video game walkthough on YouTube.

I usually don’t watch someone else play a video game, but it this case…I will never play Resident Evil 7, it dose not seem as scary as I thought it might. But part of my disability is hyperactive nerves and when I’m watching a horror movie I’ll find myself looking at the ground until that demon jumps out of the wall. That being said horror is my favorite kind of movie even if I jump two feet every time I see something scary pop out of nowhere, even if I see it coming form two miles away.

If I play video games like that I’m known to turn into the guy who stands in one spot and never ever beats the game because he doesn’t want to go out of that door, and I’m tired of knocking shit over and accidentally throwing my controller against the wall due to me jumping two feet over nothing.

Afterwards I was rolling around my house looking for a sweatshirt so that I could take the first of two trash bags outside. A few posts ago I mentioned that my house was up to A.D.A. regulations. That being said…every house in our neighborhood that looks just like mine has a small patio leading into the front door and in order to get onto that patio you need to step up two concrete steps. Unlike the other houses, my house is on a hill, oh wow, look at that; Nebraska actually has changes in elevation!

The owner of the house has made a ramp that allows me easy access from the driveway to the front door or vise-versa. That being so, I tied the trash bag, put the trash on my lap, opened the door, went outside, turned my chair to the side so I could reach the door to close said door, and closed it just to start using gravity to roll me down the ramp that turns the other way when you’re at the half-way point.

Just as I’m doing this I see two kids outside walking past my house via the sidewalk. I look up to see one of these two kids putting a piece of pizza in the other hand just to take the trash bag from me as he walks over to the outside trashcan to throw it away.

As he grabbed it I was slightly caught off guard as I say, “Oh…thank you very much,” as he replied with, “You’re very welcome.”

So I turned around and came back in the house to grab the second trash bag, but instead of that I found myself thinking, “That’s a nice kid.” A few other thoughts are drifting around in my head such as, “When I was that young kids were not that nice.” As thoughts are drifting though my head I think, “Did he just help me because he assumed that I can’t do it?”

And that got me to thinking  about every time I go somewhere with my fiance and she gets back into the car while I’m putting my wheelchair in my trunk; watching people look at her as if they’re thinking, “Wow, she’s an asshole!”

As far as that goes, I have a system…I rely on that system, if anything fucks up that system…

If you see me standing at the back of my car disassembling my wheelchair to lift it into my trunk and you say, “Do you need any help,” I’ll always say, “No,” I might even finish by saying, “Thank you though.”

When putting away, or even taking out, my wheelchair I have a system of taking it out/putting it back and what parts need to be removed first, and how to balance myself against my bumper while I do it. I also know how to work my wheelchair, you don’t. If another body invades my space, it fucks up my whole world and makes me uncomfortable. That does not mean I hate you, I’m glad you want to help, I understand that it is not your intention to upset me.

I just don’t like turning around, finding a new way to balance myself, and making you feel like you’re doing to whole thing by yourself because I can’t be in your way. I understand that you might attempt to know, but you really don’t; every time you move, I have to move in a way that I’m not used to it that situation. You might be able to move around other person, but I can’t, well I can…but if I try to I’ll most likely fall and try to grab onto your body for support…

And grabbing onto someone you don’t know, while I have an excuse to do so in said situation; it’s still weird. And you don’t know my disability, if I grab you you’ll grab me back, which is awesome; but they way that you assume is correct to do so just makes it harder for me to walk.

It’s best that I just stay out of your way, and then I need to give you instruction on how to assemble/dissemble my wheelchair as well as where to put the pieces because it’s the best fit in my trunk.

I think all of this when I look at you and say, “No, thank you though.”

And then I’m looked at like I’m weird for not wanting help. And Shannon knows this, I explained this to her. When we get done shopping she’ll just get in the passenger seat and wait for me. Other people must assume she is an asshole. She knows that if I needed help I would ask, but I don’t; so she sits there and looks like an asshole.

I do things by myself. Oh look at that, someone in a wheelchair who tries his hardest to be as independent as possible! Shannon isn’t always going to be there, neither will some random ass person; I got to learn how to do shit on my own.

Once again, I know you are tying to be nice, but it’s often not needed.

So…that all runs into, “Do they just do it because they don’t know any better? Are they assuming that someone in a wheelchair can’t do anything”

Not in a Wheelchair

I had a dream the other night. While I can not remember the specifics of said dream. I do remember that my fiance was in it. Tonight she was laying in bed with me asking…

Earlier that day I woke up and looked at my phone to see a text message from Shannon and I can’t really remember what was said, nor do I care to find my phone and go backwards in my text log to find out. But I do remember telling her that I had a dream with her in it, but it wasn’t the bed dream and I shortly explained.

We were laying in bed when she said, “So you had a dream about me that I was mad at you because you didn’t go on a hike with me when we were on vacation.” This lead to me explaining to her what little of the dream I remembered as she asked, “Were you disabled in this dream?” And this was after she said, “Well that just makes me look like an asshole.”

So, as far as that question goes; for those of you who do not know, yes, I am physically disabled and spend the majority of my day in a manual wheelchair. However I’m not disabled in my dreams. I never watch myself walk, I don’t sit there and watch myself walk. Mainly because I can’t walk as well as I used to, but also because it’s hard for anyone to watch themselves walk. So that’s where I think I get that from.

I know that I’m disabled in my dreams, I might even be in my wheelchair, but if I had to run from zombies I could get out of my wheelchair and run like I was trying to get the gold metal in the Olympics.

I remember having dreams where I said something like, “You can’t legally do that, I’m disabled and you can’t discriminate against me in the workplace; and by you taking those actions, you’re not telling me otherwise.” In that same dream I’d end up running the football better than Marshawn Lynch.

She asked me and it made me wonder, “How many people in wheelchairs view themselves the same way in their dreams?”

The Festivial

There I was, looking at the rolling hills covered in grass, scattered with tress here and there. These were not the type of rolling hills you would expect to see in Eastern Washington or Northern California, but hills nonetheless; hills that started at your feet and only sat two feet high.

See, normally I’m not disabled in my dreams; technically I was not disabled in this one either. If I walk, or run, in my dreams I don’t have the same difficulty as I do in real life.

I remember having a dream where I was running backwards with a double barrel shotguns in each hand as I showed zombies what it’s like to cease all brain activity.

I was sitting on a hill, in my wheelchair, listening to the distant sounds of live bands from every direction around me.

If you have ever been to a festival located in the Pacific Northwest, picture that.

I don’t know how or why I ended up being pushed by some dude, but there I was being pushed around, over the grass, at a fast rate of speed by a guy who I didn’t know. A drunk guy with a beard and a chubby midsection.

He was running, with me in front of him as I reached down and held onto the frame of my wheelchair with each hand while I sit in for  the ride of my life.

Every wheelchair has a footrest, a place to rest your feet. This footrest typically sits in front of you, in front of the tires a few inches above the ground. High enough to allow for a 360 degree rotation of the wheels that are on the front of the chair; the ones that are three inches in diameter, the ones most people don’t think about.

Up this hill down that hill, the physics of the situation were blowing past the mind of my driver as I sit there having fun with the thought of what could happen.

Picture a line, as if you were drawing on a piece of paper. That line is four inches long, point A sits three and a half inches above the other line that has an arc to it. You’re just hoping that point B of the straight line does not crash into the line that has an arc.

Up another hill, this is like the fifth hill we have been up and the fourth hill we have been down. At the top of this hill I see two trees, one on my left and one on my right as I also see a congregation of people standing about thirty feet in front of me.

Here we go…another hill and we are going down at a speed that makes you think Forest Gump was taking me across the country and back again.

This time it didn’t work like it did the first four, at the bottom of the hill the front of my footrest impacted with the ground, bringing my chair to a complete stop as it continued to go forward on a different axis of rotation.

I was thrown from my wheelchair as my body crashes into the ground in front of me. The wheelchair is now laying on the ground with it’s left wheel kissing the ground like a grandma forcing a kiss upon her grandchild’s cheek. The right tire is spinning as fast as it can go, just in the air; spinning with whatever momentum was left.

Forest Gump is now laying on the left side of his body as he was thrown to the ground also.

A few seconds later the driver gets up and walks over to me with his arm stretched in front of him pointing all of his fingers at the ground, “Man, do you need help…I’m so sorry.”

Catching him by surprise was me looking up at him with water spilling out of my eyes as I swing my arm in his direction hoping for a high five as I’m laughing and pumping with so much adrenaline that you would think I was Hunter S. Thompson sitting on a bed in a hotel room before my lawyer turns into Satan with six boobs on his back.

“Are you okay,” he says with a smile on his face as my hand slaps into his, “Yea man, that was fun”

“You sure?”

“Yea man, thank you for treating me like a person and showing me a good time.”