Thursday, June 30, 2011

Convenience in the CP world

The words "convenient" and "spontaneous" and any of their variations just don't exist in my life at this point. I hope that someday convenience will become a part of my life. Everything seems like it has to be planned out a week or more in advance. I miss so many of my friends, but I can't just jump in my car and go see them; I can't even walk to the bus stop, call someone and say "I'll see you soon." I can't be the spontaneous person I really want to be, and it's because of my CP and no other reason. Anything I want to get done depends on other people helping me, and I can't even begin to explain how much it bothers me. If it's not transportation, it's money that stops me. I can't even go look for a job until someone else is available to help me. When you have CP, nothing ever just "works out", it all takes entirely too much planning, sometimes a week's notice just to go look for jobs. What gets me more than that is when I actually ask for help, I hear a response that basically amounts to "I need to live my life, you need to make this happen yourself."  The only time convenience comes into my life is when others tell me that it's not convenient for them to help me out. There are some things I can't interrupt, and I know that. I never asked anyone to take time off from work to help me out, but I can't even count how many times I asked for help and heard "Well, I'm supposed to meet my friend for dinner". The way I'm told always makes it sound like this is a real obligation, and it's obviously not. I understand I'm not the center of the universe, but it's always the same people saying that I need to make things happen for myself who are refusing to help me when I ask for help. They don't see that when I ask for some help, that's the only route I feel I can go to get things done. Nothing is ever convenient for me, and nobody is even sympathetic toward me. Sympathy isn't what I'm looking for really, I'm looking for people to stop criticizing me for asking for help and just help me. They say they're my biggest supporters, but they just refuse to let me get in the way of them living their lives. The way things are, they'll never change. I don't deserve basic things like respect and privacy because I'm not making money, but the people that feel this way toward me don't make any effort to help me fix it. If money is that important to YOU, you should want to help me succeed. If that's really what you want for me, just see that I want it too, and HELP ME.

Even if I have trouble finding a job when I can get out and look, there are alternative solutions. I could apply for Social Security Disability, but I've tried that twice in the past and both times I got denied. I brought this to the attention of a friend of mine, and she suggested that I look into applying for welfare benefits. SSDI and welfare aren't really the way I want to go. I'd rather be productive and get a job, but obviously that doesn't seem entirely possible right now. Applying for welfare seemed to be a good idea, even if I'd only be on it until I found a job. I brought this to my mom's attention and she said "I don't think you need to be on welfare, your dad paid into Social Security. You should qualify, I think they denied you because you were in college. Now that you're out you should qualify." Hearing that makes it seem like she wants me to be in a dead end life. I know it's just a preliminary test, but the PA welfare website TOLD ME I would qualify within a few minutes. Somebody please explain to me why I should waste my time with Social Security when the Welfare Dept. already told me I could get cash assistance? Why does it seem like my "biggest supporter" is trying to keep me under her control? Finally, when something seems convenient for me, complications come up when these people who are supposedly supporting me get involved. I guess I should start working on this behind their backs, and when they see checks coming in the mail in my name, then they'll say they want a piece of it. At that point, all that's left for me to say is "it's not the way I wanted to get by, but this is my money and you doubted me the whole way. Don't tell me you deserve any of it." It would be a possible first step toward my independence, it figures somebody would try to stop me. I don't even know what to say to them anymore. Any ideas? Feel free to let me know.

Friday, June 24, 2011

I've heard this before and I'll probably hear it again, but how to handle it?

I've heard the same thing from some family members, some good friends, and some people I'd rather never see again. At various points in the last eight years or so, there have been a few people who have suggested to me that I should date someone with a disability; most of these times I was told I should find someone with CP. I don't quite know how to feel about this because, like many situations in life, I see two sides and can agree with both of them.

On one hand (pun absolutely 100% intended), I need to find somebody who knows how it is to live with CP and who is just as aware of my desire to be as independent as possible. She'll need to understand how CP affects me even when I try not to let it "get in the way." I'm sure there would be situations where one of us may need some help and the other can help out, but there would be just as many situations where we couldn't help each other, where do we turn then? Speaking of not being able to help each other, this may be one of the most negative-sounding positive qualities to a couple where both parties have disabilities, and that quality is the ability to understand that if I say "I can't" do something, I really mean it. There would be no lecture on my negativity, nobody there to say "never say that" in an attempt to give false motivation, it's all understanding. I'm absolutely sure, whether I find someone with or without disability, they need to know the difference between "I can't" and "I don't know if I can do that."

On the other hand, I might find someone without a disability. Some people might be thinking that there couldn't be any negatives to me dating someone without a disability, but I see a few. First and foremost is my preconception that I don't want to "bother" her too much asking for help that I might need, especially if it comes up often (bother, for lack of a better word). I know that if I had a girlfriend, she would be more than willing to help me when needed, but I would never want her to think that I'd be taking advantage of that help, and I can see someone feeling that way because everybody has their limits as to what they can handle. My disability in combination with my living situation make it difficult to find a job. That makes me feel like I'm not good enough for anyone. If and when this relationship thing finally happens for me, I want to do it the right way; treat her like she means the world to me because if all goes right, she would. The next thing that comes to mind isn't easy for me to talk about for so many reasons;  apprehension, past experiences, and the one piece of negative self-image that partially stems from my CP. I have NEVER been told that I'm attractive, and with every single girl I meet, I can't help but wonder if it is the CP that causes this or has caused it in the past. I might hear her say that it's not because of the CP, but how can I possibly know she means it? It's nearly impossible for me to believe that. My friends tell me I'm a great guy, but without some level of physical attraction, nothing ever happens; a potential girlfriend walks by me and doesn't even look twice. It has to be said here that I'd rather not deal with people who can't accept me for who I am, disability or not; but once again the physical attraction, as shallow as it seems, has to happen before any deep connection can be made. Of course, if something does eventually start to work out, the issue of physical attraction will come into play again later on; Without going into too much detail, everyone over age 16 probably knows what I mean when I say that. That's an experience I haven't had yet, my friends know it and some of them keep telling me I need to change that, but they don't realize how difficult it can be. I'm pretty confident in who I am, but the nerves come in when I start thinking about who others think I am. I'm often told not to worry about what others think of me, and I try my best not to in most aspects of life, but in the dating scene I HAVE TO think about how they all see me. I have to analyze the things that she says, and the moves that she makes (when they seem positive) to determine what her intentions are. Nobody ever said "get the hell away from me" to someone they just met and joked about it, but the opposite has been done. People lead people on all the time, and sometimes I wish they'd just shut down the whole operation the moment they knew it wouldn't work. I would rather hear her say "get the hell away from me" than give me her phone number and never answer a call. Sometimes, if you don't tell someone to stop trying, they won't. Definitely, do not give me your phone number if you don't intend for me to use it. Mixed signals never make anything better. Don't even let me climb onto the ladder if you intend to throw me off of it anyway. There are some people who will tell you to step back off the ladder as soon as you step on the first rung, but there seem to be more who would rather see you climb near the top so they can push you off and watch you fall and get hurt. I personally believe that those people who like to watch people get hurt that way deserve to be alone for the rest of their lives. Some of my best friends are girls who have, at some point, told me that they aren't attracted to me at all and they just want to be friends. I can appreciate that, and I really do appreciate these friendships, but I feel like I'm at a point where I can't create many more friendships like this, for the time being. The fact is, that has been happening to me since I was too young to even know what attraction was, back in the days of cooties. Even in kindergarten, three of my best friends in the world were girls and the boys thought this was really odd. I didn't care that they thought it was odd though; these boys were the ones who antagonized me to no end just because my hand looked different and I walked a little funny. These three girls will always hold a special place in my heart, and I really hope they all know it. My mom used to tell me that she thought I would have married one of them. All these years later that seems impossible, but I hope they remain friends for life wherever they decide to live. At least the internet makes that a bit easier. Friendships like these that I've made through the years will be with me forever. I truly do appreciate every one of them, but I'm starting to feel like I can't make many more because now I'm looking for something more than close friendship.

I don't know if, when, or where I'll find who I've been searching for, but I do know that the lack of confidence is not permanent, it's situational. I know I will be myself again, and when I am, the CP will still be there. A future girlfriend or wife will have accepted my disability and accepted me for me, but finding that person seems incredibly difficult. My friends tell me to put myself out there...well, it's hard to get "out there". When I said that, it was suggested that I try online dating. I tried it, and met the girl who gave me her phone number and didn't expect me to use it. After that experience I decided to try again online so I didn't feel like I let her win and I got burned a second time. I can't worry about treading lightly, and yet I have to. There are two sides to everything. In this case, I want both sides and so far I've been lucky if I found one of those in someone. If I tell myself I'll never get what I want, then I won't. I know she's out there, I just don't know where, when, or whether or not she has a disability.

Everyone keeps telling me to be patient, but that's all I've been for a long time, and I'm starting to get sick and tired of the waiting game. I've heard that you have to fail before you can succeed. In this particular aspect of life, nobody has even given me an opportunity to fail yet. I've had some experiences, all of them crazy, but if you'd even call these experiences "dates", I would have to call you a liar.

Whoever she is, with or without disability, I know for sure that she will have to accept and love me for who I am, and I will have to return those feelings. That will be the easiest thing in the world to do, for both of us; I'm sure of that, too. I just can't wait to meet her.

First thing, I should probably explain the name of this blog: it comes from one of my favorite quotes ever. "Before you criticize someone, walk a mile in their shoes. That way, when you criticize them you're a mile away, and you have their shoes."

This post is partially inspired by a good friend of mine, the blog post that inspired this rant is here:

Why do I want somebody to steal my shoes? Because there are so few out there who really know what it's like to be me. I've written some poetry about this recently, but I'm still not sure if that would properly get the point across. Simply put, you don't need to experience my disability to experience my situation. Of course I can't tell anybody to go "get a disibility", but I can say everyone should try living with the circumstances of my disability. I know there aren't many who would willingly do this, but I wish everyone would. If you're up for the challenge, here's how to do it. First, hide your car keys; the moment you start driving, you've done more than I can at this point. Next, if you have a job, you can't continue because you're already ahead of me. I know you might say "I have a job, but now I can't drive to work." Ok, can you take a bus or a train? If so, you're still "failing" at your attempt to be like me. So now we've taken away transportation and money. If you want to hang out with your friends, you'll need both of these things. Good friends will give you a ride if they really are good friends, no doubt. There's a limit to that, too though...especially with gas prices being so high. Try to get a friend who lives an hour away to come pick you up and watch what happens. So by now, if you HAD a job, you've surely lost it because you never went to work. So here you are, no job, no money, and no way to travel further than you can walk. By the way, that's limited too; there's no way for me to put a definite number on this because there are so many varied situations, but let's just say you should take your normal walking distance for any situation and cut it at least in half. At this point, you're probably thinking "awesome, now I'm pretty much stuck". If you got this far, you're very close. The next thing to throw into the mix is someone constantly bugging you, saying things like "get a job", or "you have no motivation", basically, somebody to constantly kill any positive thought you could ever have. Also, these are the same people who say they can't help you when you ask them to drive you around to find a new job. The next thing you'll hear is possibly the worst part of it all...surely someone will say "you sit at home all day, no job, no bills, no worries, you should be the happiest person on the planet." The easiest flaw to see here is that the "no worries" thing is a lie. I get called lazy all the time too. Lazy means you refuse to be active. I want to be active but it is very difficult because of all these factors. With this unused energy, it makes it difficult to sleep. Everyone knows what it's like to go stir-crazy; imagine feeling that way 5 days a week and having to depend on others to help you out of it. If being in this situation doesn't make you connect with where I am right now, maybe I'm the sane one and you're crazy.

The blog post that inspired this is about how to include kids with disabilities in the classroom. The goal of the principle of inclusion in the classroom is to prevent someone's disability from affecting their learning. I'm not a teacher, I'm sure she can explain true inclusion better than I can, but it inspired me. Try reversing the principle of inclusion. Don't try to hide or work around disabilities, instead, force people without disabilities to experience them for an extended period of time. Instead of "including" people with disabilities into the "able" world, take all those without disabilities and include them in the world of living with a disability. When you've seen this side of the world, maybe you'll think twice before you ever ask anyone with a disability about why they're depressed.