A perspective life lesson

I have for a long time now felt that my disability has been a gift, I would have to say ever since I was around twenty-two, around the year of 2006.  Before this I wouldn’t say I was bitter about being disabled, from what I remember I would every now and then get a little upset but I would have to think that this was a pretty normal thing to happen to a kid and young adult.  While up growing I didn’t know hardly anyone else who had a disability so I have no way to gauge the normalcy of my attitude, all I have is some basic common sense psychology.  I remember one of the biggest times I would get upset was when I would forget to plug my wheelchair in so the batteries could charge over night and the next day was a beautiful summer day when we were on summer vacation.  Back in those days batteries in wheelchairs, and probably in most things, were not very good so during summer vacation, it was pretty vital that the wheelchair was charged pretty much every night.  I should mention that I have three brothers and interestingly all of the neighbor kids were boys, so we were always up to something.  Whether it was a football or basketball game, or a roller blade/bike trip down the road, my wheelchair had to keep up or I was going to get left behind or out of whatever was going on.  So when the chair’s battery died, it meant I became a spectator, which didn’t go over well.

Other than the occasional fit when my brothers were outside having fun and I was stuck inside, I don’t remember being super upset over being disabled.  I know I would wish I could walk sometimes.  I don’t remember this personally but my mother tells the story about when I was in the third grade, we had to write a letter to Santa Clause and students in the fifth grade were going to respond to them.  This was when you could celebrate Christmas without getting prosecuted!  The year before this I had gotten probably the coolest Christmas present from Santa, it was a remote controlled fire truck that the ladder was also controlled through the remote.  I couldn’t play with a lot of normal toys due my disability so honestly, this truck might not have been that cool but I was blind to its mediocrity simply due to the fact that it was something I could play with.  I remember playing with that thing seemingly all day.  I think within that same day it stopped working and needless to say I was devastated!  I’m pretty sure it was definitely decided that I had killed it by drooling in the controller. I remember some electronics were less resistant to my drooling than others and while this is the only thing I remember completely killing with drool, I highly doubt it was the only victim.

So I told you the story about the fire truck so I could tell you about the letter to Santa.  I started out the letter by telling him thank you for the fire truck but it had broke.  I then went on to tell him that I didn’t want any toys this year, the only thing I wanted was to be able to walk.  I couldn’t write or type in the third grade so I was telling my aide what to write, I can only imagine what that was like having to write something like that.  The teacher read the letters we wrote before giving them to the fifth graders and when she got to mine, she decided it was probably not a good idea to ask a fifth grader to respond to something like that so they decided the teacher would write the response.  I think she wrote something about working really hard and I could do it.  This was one of the other times when I was upset about being disabled and I have no idea why I was at that time.

I think I have my family to thank for the lack of sorrow I’ve felt through out my life over being disability.  It is popular for people with disabilities to say they don’t consider themselves disabled and I know I use to do the exact same thing until I realized how dumb of a statement that really is. I’ll get into that in a minute but my family treated me both as I was disabled and as if I wasn’t in the seemingly perfect balance.  As I mentioned, we were regularly playing sports, football, basketball, baseball, and whatever else.  I couldn’t use my hands to do anything but drive my wheelchair so my one older brother came up with the rule in football where if they passed me the ball and it hit any part of my wheelchair or body, it counted as if I caught the ball.  I was playing the opposite of dodge ball.  Interestingly, I can’t remember any of the times I was hit in the head…. is that something to be concerned about?  The same basic rule applied in basketball, if the ball hit me or my wheelchair, my team got possession of the ball.  Ever had a pick set by a 250 pound hunk of metal?

My oldest brother was not into playing sports, he was probably a little too old to want to play with us and he just wasn’t into sports.  I have two older brothers and one younger.  The oldest brother still had a vital role in my up bringing though.  While he didn’t do a lot of interacting with me in regards to playing or hanging out, that I remember, and again this was most likely due to the age difference, my older brother was always the mechanic/electrician who was always there to fix my wheelchair and other equipment when needed.  Even today still I can call him up and ask him to come to fix something or build me some crazy invention I have thought up and he’s at my apartment just as fast as he can get here.

So my brothers definitely did whatever they could to include me in whatever they did but sometimes this was simple impossible and when situations like these presented themselves, they went ahead without me.  This might sound mean or maybe it was even typical kid behavior but I honestly believe that these situations were the most vital to growing up with an acceptance attitude toward my disability.  While being included in as many things as possible was undoubtedly important to me, the fact that I was left out of activities due to my disability was more important because it taught me a couple of things.  One of these lessons was how to be okay with having to make sacrifices due to my disability.  For some reason, it is so difficult to accept you are going to have to make sacrifices because you are disabled.  I have a feeling this is because most of the time, the reason why you are disabled is not your fault so it can be easy to fall into the trap of feeling like you have been cheated out of something and you had no control over it.  While I don’t remember feeling this way specifically, I would have to imagine I did at some point in my life, and perhaps this is something I figured out how to accept.  It’s a question, or debate, on what does the word fair means and I think this has gone right out the window in todays world.  It seems almost everything is centered around whether something is fair or not.  Hell, grade school students “can’t” even have a birthday party anymore without inviting the entire class because it would not be fair if little Jonny didn’t get invited.  So around the time I really stopped getting upset over my disability, I was also having an internal fight with myself on happiness.  I wasn’t happy with myself and honestly thought everybody who said money doesn’t buy happiness were just saying that to look superior and even they knew money did buy happiness.  By money, I’m referring to both money and materialistic stuff.  I don’t really know what my pivot point was but over time I realized that the definition of happiness was something that I could define, happiness was a sensation instead of a status that I had to obtain through approval or societal norms.  This quickly lead me to the question of fairness since I think they are pretty closely related.  It made me reconsider what fair really meant and who defines it, what I felt was fair, someone else might think it’s not and vise versa.  This made me realize I can redefine fair.

I use to think of fairness in two ways, same treatment, and right and wrong.  When I would see somebody getting ahead by doing something illegal or morally wrong, I would think it wasn’t fair because I don’t want to do something illegal or immoral.  This is not what fair means though, in my mind anymore anyway.  I realized that somebody could get rich by doing something I really don’t want to do but legal and moral, so would that be unfair?  I came to the answer of no, it would actually be fair.  Just to be clear, I am in no way advocating for illegal or immoral activity and I would never do either to get ahead.  I hope to clear this point up in just a second.  We as a society have made this dangerous transition into where if somebody has something that we want but we don’t see an easy way to get it, we default to the unfair argument.  Now sometimes somebody might honestly believe that the desired item truly is impossible to obtain for them.  Some people kind of get paralyzed with having to figure out how to implement an idea they have or how to start a business or whatever it may be.  I know I still get this way sometimes when I have an idea, the overall picture is overwhelming and it can be very easy to get stuck in this mind set.  Even though most of us have had it drilled into us ever since we have been kids that we can do anything we put our minds to, this can start to sound like something our parents told us just because it sounds good and isn’t actually true.  I completely understand this and honestly use to think this myself.  However I’m going to say that what our parents use to tell us is absolutely true! Never before have we had such easy possibility to make something of ourselves without help from already established people!  For example, did you know that Amazon has a self publishing services where you can write a book on your computer and post it for people to buy on their Kindle?  So without spending a single penny, you can become an established author.  Are you a good singer?  Record yourself on your computer using a free program and post it on Youtube for free and people will find you!  Are you like me and have opinions?  Start a website to post your opinions.  The fact that we have the ability to make an article of clothing and have it seen by millions within minutes is testimony as to how opportunities for success are way more plentiful than ever before in history!

As I said before, there is a big diffidence between fairness and equal treatment.  In order for something to be unfair, somebody has to receive preferential treatment over someone else that makes the playing field unlevel.  This can be incredibly easy to distort and I hope I can effectively define this.  A popular argument when it comes to this debate is that when someone has more money, they have more resources and therefore can do things that you can’t.  While this might be true, I would have to ask how did they obtain that money?  Unless they inherited it or obtained it unethically, they most likely worked their ass off.  A level playing field is more geared toward the legality aspect of things where one person has to be prosecuted or not in the same manner as everyone else.  If you find yourself making the argument that the playing field is not level due to the money aspect, you may have an initial goal set too high.  There is nothing wrong with setting high goals but there is something to be said about baby steps and having to work your ass off to get that higher goal!

This is where I figured out that the mind set of being disabled is unfair is really a personal definition that each person has to figure out for themselves.  I would say that last statement does not just apply to disabilities, nor does it just apply to people with disabilities, but applies to everybody and everything in your life.  The ability to change what you perceive as fair is not easy, especially in today’s world where it seems to be dictated to us by various avenues.  We have it drilled into us that we are deserving of things and if we don’t have those things but other people do then it is unfair instead of thinking about why we don’t have what we want.  I should also point out that this does not have to be something materialistic, it could be an easier life that you think other people have that you want, or the ability to do something.  I would have to imagine that material things are the prime culprits for feelings of unfairness, and again this is largely due to what societal standards have become and can be hard to break free.  When this is achieved though, the breaking free from this societal normal, I can tell you that it is one of the most liberating experiences you will ever have and will open so many doors!  By accepting more as actually fair, you begin to become happier.

The other thing that happens when you start looking at fairness as your own responsibility is more good things happen to you.  This is an interesting phenomenon to think about because how could the way your mind works effect what happens in the physical world?  I could go into a quantum physics lesson to attempt to explain but I think the answer is actually pretty simple and works in a couple of ways conjunctively.  The way this happens is through your perspective toward things.  Everything is relative to something else, we have to compare something to something else in order to determine if we like or don’t like something and this is our down fall.  A book I read recently that really drove this point into me was named “The Freedom of Self Forgetfulness” by Timothy Keller.  I would encourage everybody to read this pretty short book that you can buy on your Kindle $1.99 and will take you no time to read.  In the book he tries to get the idea across that if we can get to the point where we don’t have to compare ourselves to something else, we would be much happier and do more good in general.  This is of course an incredibly difficult state of mind to achieve.

The other thing that happens when you start looking at fairness as your own responsibility is more good things happen to you.  This is an interesting phenomenon to think about because how could the way your mind works effect what happens in the physical world?  I could go into a quantum physics lesson to attempt to explain but I think the answer is actually pretty simple and works in a couple of way conjunctively.  The way this happens is through your perspective toward things.  Everything is relative to something else, we have to compare something to something else in order to determine if we like or don’t like something and this is our down fall.  A book I read recently that really drove this point into me was a book named “The Freedom of Self Forgetfulness” by Timothy Keller.  I would encourage everybody to read this pretty short book that you can buy on your Kindle $1.99 and will take you no time to read.  In the book he tries to get the idea across that if we can get the point where we don’t have to compare ourselves to something else, we would be much happier and do more good in general.  This is of course an incredibly difficult state of mind to achieve.

We have all probably seen those commercials on TV where they are showing images of starving children where you can see their rib cage.  How many of us have a gut wrenching feeling in our stomach when we see those images?  Hopefully every one of us.  Most, probably all, of us in the United States of America are in paradise compared to the way of life in those countries but we don’t see that normally.  Even when we do recognize that we have an awesome life comparably, and should be thankful, it doesn’t translate to our need to stop whining about our own perceived injustice usually.  When it does translate, it only last a pretty short period of time before we are right back to focusing on our insignificant injustice.  I am absolutely the same way, I will get something that will bother me and will forget that it is so incredibly insignificant in the greater realm of things.  I’m not sure if this is basic human nature that we have to learn to get control over or is it something we have been taught that we have to unteach ourselves.  Obviously it takes growing as a person either way, whether it’s natural or a taught flaw in our character.

I love to free write and, if you can’t tell, I never know what I may write about specifically from start to finish but when I do start writing, I always have a message in mind that I want to convey.  Everything in the middle of the beginning of the article to the end should strength whatever message I’m hoping to get across.  So I would like to now circle back to the reason I started this piece with the acceptance of being disabled.  I have pretty much always hated political correctness, I’ve always viewed it as people not having a backbone and getting their feelings hurt.  Remember when we were kids and the saying “sticks and bones may break my bones but words will never hurt me”?  What ever happened to the second part of that saying?  It almost seems now we would prefer bones breaking over hurtful words.

A “people first” language has somewhat recently been on the rise among the disabled community and one of the things in this movement is to refer to people with disabilities as people first, aptly named I guess.  For example, it is wrong to say someone is a “disabled person”, instead they are a “person with a disability”.  If you are like me, you are probably thinking what the hell is the difference!  At first I thought this was just another stupid political correctness ploy to make somebody feel better, and I do think that is at least part of it but I’ve started wondering if this is not a way to make people with disabilities feel that being disabled is unfair.  That it is an injustice.  I don’t know if this is the intent of this movement, I think it is probably done with good intentions but is going to have adverse effects on the way people with disabilities perceive their situation.  By conveying the notion that someone’s situation is unfair, you can easily take the desire to help themselves right out of them.  It makes it a lot easier for the individual to play the role of the victim and invites pity.

Let’s forget about the demoralization unfairness can create and let’s look more at the way that this unfairness invokes the desire to change since this article is suppose to be about the acceptance of being disabled.  I have for a while now thought of my disability as a gift, which I would have to imagine is not exactly something you hear a lot of people say.  I believes that God creates everyone in his image which means if you truly believe He is perfect then logically you would have to conclude that every person is created perfect.  Of course one might ask when does the creation actually take place.  For example, before I was born, there weren’t any complications.  It wasn’t until I was being born that I had a lack of oxygen which then cause my cerebral palsy.  So the question I could ask about my situation would be whether I was created by God at the moment of conception or was He creating me the whole time I was in the womb and did He have something to do with the complication at birth?  You could probably debate this forever but personally I believe He did have something to do with those complications and I do not think of Him as mean or without compassion.  Instead I think I am, just like everyone is, part of His plan and I am here to serve a role.  By believing this, the next logical conclusion I have to make is that it is impossible for my disability to be unfair.  If I am to play a role in a plan then so is my disability, rendering it as a gift.  This is really hard to get your head around and I’ve probably just begun to understand this.  It’s hard to realize this for a number of reasons but one of the most prevalent reasons is that I am a burden to people, in the sense that people have to take care of me.  At family get togethers, somebody has to do things for me, such as feed me and other personal things instead of just enjoying the family time.  Now I honestly don’t think my family thinks for one second that I am a burden and they probably don’t think twice about helping me with whatever I need but the fact is still they have to do those things.  This can cause a number of internal issues unless a coping mechanism is used.

I have two, maybe more but two main, mechanisms I use for handling the feeling of burden.  The first one is the simple idea that they are family and out of love, they don’t even think about everything they have to do as extra work.  I know when I was a kid, I don’t remember ever feeling like a burden to my parents or brothers and I’m betting this was typical for any kid.  When a parent won’t drive the kid somewhere, it’s never fair in the kid’s mind, who cares if it’s an inconvenience to the parent.  I didn’t start feeling like a burden for everything my family has to do for me until I was an adult, probably because I realized that they were doing things for me that I should be doing for myself.  The other coping mechanism I use is the fact maybe I am suppose to be kind of like a teacher.  This kind of sounded arrogant to me when I first wrote it and I think it did so because it seems like someone would have to be educated in a field in order to be a teacher of any sort.  I think once again this notion has become a societal myth, we look at people’s academic accomplishments to determine whether we can learn anything from them or not.  The truth is, how book-smart someone is really doesn’t matter in most cases.

A lot of times the people who have the most useful lessons are those with experience and maybe not a lot of book smarts.  I know I use to focus on book-smarts when determining someone’s credibility.  My turning point with this was with astronomy.  I was fascinated with space and the awesome vastness that it is but one day I realized that if I knew all about the planets and everything else there is out there, what real benefit would that be?  Unless I am going to make a career in astrology, what would I get out of that knowledge?  Of course if it is just a hobby, that’s different.  But I realized that this knowledge is pretty useless, especially when you consider someone who knows how to do metal work or carpentry work?.  Which set of knowledge/skills could you more easily live without, the knowledge of if Pluto is a planet or not, or the know how of how to build things?  One of my favorites examples comes from a radio commercial I heard for a college.  It started out talking about this guy who had a job cleaning out the back of a garbage truck and was really emphasizing how demeaning a job like that is.  I remember thinking how arrogant can you get!  What the hell is wrong with cleaning out a garbage truck?  I can just about guarantee that garbage truck helps more people than probably 98% of people with college degrees.  So if you base your worthiness on how many people you help, you might not want to go to college for a degree!

As this is an article about accepting being disabled, or being a person with a disability if you insist on politically correct, and I think I have rambled on way too much, I will start to wrap up.  I personally feel strongly that a disability is a gift.  This is sometimes very difficult to claim, how can the inability to do something be a gift?  This is exponentially more difficult as the disability gets more and more severe.  I know myself, I would love to be able to feed myself just a simple snack at 9:00 at night so how is it a gift that I can’t?  I have determined this to be a gift because I am on the verge of inventing a gadget that is going to feed me a snack.  When I do invent this gadget, I will absolutely share it so that others in the same situation might be able to use it and feed themselves.  If I wasn’t disabled, I would have no reason to try to invent this, probably.  This right here is the gift, from necessity comes innovation and this innovation has the potential to help people.  I would argue that regardless of your situation, you do have a purpose!  It is just a matter of figuring out what that is!

2 thoughts on “A perspective life lesson

  1. Brad, we could not agree more. Having a disability is a gift. You, Stacy, and others are put here on this earth for a reason,part of the plan. You are teachers, each and everyday. Teachers of being thankful for all you have,all you can do. There is a purpose for everyone here, and you and others have found theirs!

Leave a Reply

Your email address will not be published.