Not Just Another Camp

For years I have been trying to explain to people, verbally and in writing, what exactly is it about camp that I love so much and crave so much during the year. While I was mulling over this question, an essay kind of poured out of me, which I would like to share with you. It's edited a little bit so as not to reveal any personal information, but I think it's the closest I'm going to get to expressing the magic of camp.

I know a place that is my own utopia. Here, all barriers, whether physical or mental in nature are broken down within a matter of days, something the world's leaders could only dream about. People of all cultures, races, beliefs, and abilities live, laugh and love in harmony, without fear of being judged. We stand (or sit) proud of who we are, unafraid and unashamed. Stereotypes are quickly proven wrong in this perfect place, and soon you forget that you ever saw those around you as anything less than friends, comrades, and most of all equals. Our differences are embraced, making up the rich mosaic of what our society should be, but isn't-yet. Four summers in this place have taught me infinitely many lessons-not all of them easy to learn. I have come to realize that we are not broken toys waiting to be fixed; rather, we are strong, independent human beings with hearts, minds, and spirits of our own. The freedom I have found here far exceeds anything that could be written law; it is incomprehensible and inexplicable. I feel like the phoenix-rising from the ashes to take flight once more. Leaders of the world today would be astonished at the microcosmic potential of a little camp for cripples nestled quietly in an unobtrusive town. If only those leaders would stop looking for answers in craftily worded doctrines and realize the peace and acceptance that has been going on nearly under their noses all this time. If only everyone could know the power of camp, I firmly believe that the world would be a better place.

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Normalized

First off, I'm so sorry to anyone who actually reads this blog that I haven't posted in awhile. I got very busy with school towards the end of the year and then right at the end of June I left for camp for three weeks, so I haven't had much time to post. But rest assured the blog ideas have been piling up in my head and I'm finally going to sit down and write them all down.

It's camp which I would like to discuss now. I go to a camp for physically challenged kids*. It is one of the most amazing places in the world, and this is my fourth year there. Every year there are new counselors, new campers, and new experiences. One of my favorite parts of camp is seeing the transformation in the counselors and teaching them about our crippled world. I could go on for hours about camp, but I'm going to split my musings into different posts.

One of my counselors this year was very adament about the word "crippled". She prefered to use the phrase "physically limited". I tried to explain to her, several times, why I use the word crippled as I do, as a term of pride. I knew why the word "crippled" bothered her so much: it has such negative connotations to it. What I couldn't figure out for the longest time was why "physically limited" bothered me almost as much as "crippled" bothered her. Finally I figured it out: to me, the phrase "physically limited" is yet another attempt to "normalize" us.

What exactly is "normalizing"? It's an attempt by a "normal" person to fit crippled people into the "normal" mold, to make us less disabled, because we're not supposed to be disabled. It's an effort to make us closer to what we're supposed to be. But as we all know, me and most of my crippled brethren do not like being ordinary. Most people try to "normalize" us without even realizing it, round off our square corners, because anything different scares them. And it's normalizing that has really begun to bother me in the last few months. Let me say it straight out, for anyone who might've missed it: I. DO NOT. WANT. TO. BE. NORMAL. I am very happy the way I am. I am a crip, and don't try and deny it, or sugarcoat it. I LIKE being a crip. I LIKE being different, and I LIKE not fitting into any sort of mold or stereotype. I'm a square peg trying to fit in a round hole, and it's not gonna work. I like standing out. And sometimes, standing out scares people, whether they know it or not. And sometimes standing out is harder than fitting in. But I'd rather risk it all to stand out, then to be boring and fit in all my life. I will not stand to be normalized. I will die before I let someone normalize me. Don't be ashamed of your crippled culture. Say it loud: I'm crippled and proud!

"To be fearless when I'm scared to move

I'm overdue

Daring to be different

To scream yes, yeah I'm awake

I will not break

Daring to, daring to be different"

-Daring to Be Different by Everlife

*if anyone would like more information on my camp, feel free to contact me privately

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Oh, you don't need that...

Sorry I haven't updated in awhile. Too much going on with school and everything, I was lucky if I found the time to check my email. But now school's over, and I have a very small window of time before I leave for camp. But onto the post.

Over the last week, I have had a number of people try and convince me that I don't need the modifications/equipment I have and/or are trying to secure. It all started when my OT commented on my neat handwriting. She knows I use an Alpha-Smart for notes, so when she saw my neat handwriting she said: "Oh, I don't even see why you need an Alpha-Smart!" Now, as any person who knows me would tell you, the reason I use an Alpha-Smart is not because my handwriting is messy, far from it. The reason I use an Alpha-Smart is because I hold a pen very awkwardly due to my CP and this results in hand pain if I even write as much as one sentence. Needless to say, I hastily tried to explain this to her before she could march up to the special ed department and demand that an Alpha-Smart be removed from my IEP. She didn't look convinced...what, am I lying now?

Then last night my dad was on the phone with the Scooter Store (yes, that is the name of the store), trying to get the scooter that I need. I can't walk long distances, and since I'm going to college in a few years, I need some sort of vehicle to save my stamina so I don't collapse upon arriving at class. There's a ton of red tape and stupid stuff to wade through before you actually get a scooter, especially if you're not filthy rich, so my dad was trying to coordinate things between the Scooter Store, my orthopedist, and the insurance company. And guess what? Apparently our insurance doesn't cover a scooter/powerchair unless you can prove that you need it for use INSIDE!! So since I walk inside, I must not need a scooter! The truth is out! Yes, that's right, I just want a scooter for a nice ride, like a car, but less expensive! Grr...

And then today put the icing on the cake. It's on my IEP that if I need it, I can dictate and someone will write my answers for me. I don't use a writer unless I'm truly desperate, so when the teacher in my room for the math regents today asked me if I wanted her to write for me, I politely declined. Later, when I was handing in the test, the teacher was flipping through my answer booklet, and she goes "Oh, you don't need a writer, your handwriting's perfect!" *explodes with annoyance* Uh, yeah, and do you know how much my hand hurt after that test? I just kind of smiled and was like "Oh, my hand gets tired really easily." because I didn't feel like going into the whole explanation. Hmm....maybe if my hand falls off, they'll finally believe me! I don't have to prove myself, people. I am not learning disabled or any of the other stereotypes you try and put me in. I am purely physically disabled. Is that so hard to comprehend?

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Connect the Dots

After years of trying to figure out what exactly is it about my disability that other people (especially my classmates) don't get, I think I've stumbled onto an epiphany. They don't connect the dots!

Let me explain further. Yesterday I was meeting with my group for my English project (which was hell in and of itself, I had to traipse around a very hilly park while we shot ten minutes of footage for a project I've started to hate). There was an incident in which we all went to the bathroom to wash war paint made of lipstick off our faces (don't ask), and the other, oh, five or six members of my group were about a mile ahead of me. After finally realizing that one of the group (namely, ME) was struggling to keep up, they slowed down a little bit. I said: "It's ok, I'm kind of used to being left in the dust." Which is true. It's something I barely notice anymore. They got all apologetic and were like "Oh, we're sorry, we didn't mean to." This is what irks me about people. They think it's something THEY did. It's not. I was just stating a fact.

Another example: Later in the group project get-together I was trying to get up from a sitting position. This is not exceedingly hard for me, although I do prefer it if there's some stable piece of furniture near that I can hang onto to get myself up. I can get myself up without holding onto anything fairly well though. But in this particular instance, it was on a hill, and I was having a little bit of trouble. I got about halfway up before I fell on my butt. My whole group was like "Are you OK?" I was like "Yeah, this happens to me all the time, you can ask my friends." Then came the very uncomfortable "Oh" from my group members. You know. The type when you explain something about your disability and they really have absolutely no idea what to say.

Now, I had my crutch with me this whole time, and since they're in my classes, they know that I'm disabled and use a crutch, that I type on an Alpha-Smart and that I leave five minutes early from class. The thing is, I don't think they connect the dots. They know I use a crutch, but they don't connect that with walking slow, or balance problems or any of that stuff. You know, I would expect people not to pick up on the upper body problems I have, because those aren't ask obvious, but I never thought that people don't pick up on the lower body stuff. At the very least, I thought they'd realize I walk slow. Guess not. Connect the dots, people, it's not that hard.

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If You Want Something Done Right, Do It Yourself

I have recently concluded that if you want something done right, you have to do it yourself.

I have come to this conclusion after nearly four years of struggling in the public high school system and having to rely on other people to do things for me. A recent example comes to mind: I hold a pen very awkwardly (which might be just the way my spastic fingers move) and experience a lot of pain in my hand when I write, especially when I write a lot. This may be related to the awkward pen grip or the CP. Or both. I suspect they're all interconnected. Anyway, this is why I use an Alpha-Smart (technically a Neo, made by Alpha-Smart) to type notes at school, and it has been my savior ever since I started using one around third grade. However, the Alpha-Smart's one pitfall is it can't write anything remotely mathy, such as complicated algebra problems, square roots, and all that other fun stuff that you learn in advanced high school math classes. Nor can it do subscripts or superscripts, which I have found to be a huge problem in chemistry this year. So I am supposed to have a note-taker for both classes. Fine. Except my note-taker in math has kind of messy handwriting and she often forgets to date her notes, which leads to me failing the notebook checks. And my note-taker in chem seems to have forgotten she's my note-taker at all. I keep trying to remind her, but it's difficult when I don't need all chem notes, just the parts that I can't type on my Alpha-Smart. I tried relying on memory for awhile and that didn't work out so well. So I've recently taking to handwriting all my chem notes, because it's just too difficult to handwrite the parts I can't type and type the rest and try to piece them all together later. This has led to tremendous pain in my hand, but hey, at least I have notes now! Of course, it doesn't seem to have improved my grades any, but that's a different story...

So. If I want something done right, I have to do it myself. Rather difficult when you have a physical disability. But, hey, I'm not complaining! It's just one of the many pitfalls of the special education system which really does nothing at all. Actually, I shouldn't say that, because I have friends who've had it worse off with the Special Ed Dept. than I have. But they do very little to correct the problems I actually have, which are few. But hey, that's the school system for you! (Note: I will probably be ranting on this frequently. Be prepared.)

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A World Apart...

First off let me apologize for not posting in awhile, I am a 10th grader whose teachers have decided to inundate with homework, not to mention my upcoming AP Global History Exam...yikes!



Speaking of school....a classmate noticed the scars on my ankles the other day and asked me if I had had surgery. I told her yes. Then she asked me if it had hurt. I told her that since I was 5 years old at the time, I really didn't remember much. Thankfully, she didn't ask me for details, as what they did to my legs is really too complicated to explain unless you have a good knowledge of the leg muscles/tendons and know what exactly can go screwy with said muscles/tendons when you have CP. So I started thinking about what would have happened if a fellow crip (ideally a fellow CPer) asked me the same question. Actually, scratch then. A fellow CPer most likely wouldn't need to ask me if I had surgery. They would probably know exactly the type of surgery I had, what the recovery was like, and then they would proudly show off their own scars (I've got nothing on some of my friends, my best friend had a dorzal rhizotomy, which means the doctors basically cut through some of the nerves in her back to make her less spastic. She's got a huge scar running down her back). Then I started thinking about all the differences between the able-bodied world, which I go to school in and am basically thrust into every single school day, and the disabled world, where I do most of my activities like camp, dance, etc. So I've decided to make up a list and post it here for your viewing pleasure. Enjoy!





DIFFERENCES BETWEEN THE DISABLED AND ABLEBODIED WORLD



1) When you say you're getting a vehicle, it is understood in the able-bodied world that you are getting a car. In the disabled world, it is assumed you are getting a new wheelchair or mobility scooter.



2) In the disabled world, arts and crafts is a synonym for danger (at least among us motor skill challenged crips).



3) Every new surgery earns you a metaphorical badge of honor in the disabled world. In the able-bodied world, all it gains you is flowers and a whole lot of fake sympathy.



4) The word spastic is actually used to describe someone with spastic muscles, rather than someone clumsy or stupid.



5) Songs like Five's "Keep On Moving" send you and your friends into gales of hysterical laughter. Your able-bodied friends fail to see the humor.



6) In the disabled world, a simple trip to the bathroom can be described as a "twisted hokey pokey".

7) Crips can say "That's just the way I roll" and actually mean it literally.

I'll think of more later...any suggestions?

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BADD Highlights

Well, since a lot of other people seem to be posting about their favorite posts from Blogging Against Disablism Day, I thought I'd do the same. I'll have the title of the post first, then the blog it came from, and then my analysis/description of it and why it's one of my favs. And so, without further ado, I present you to my top picks for Blogging Against Disablism Day 2008!

Inclusion and the Myth of the Magical Mainstream, from Parenting Special Needs Children-this one I thought was absolutely brilliant. Hit the nail on the head as to what I've been trying to tell people all these years. INCLUSION IS NOT ALL IT'S CRACKED UP TO BE, PEOPLE!! I won't go into a full fledged rant about it right now, but check out the post and also an essay I wrote about the subject at Audacity Magazine.

The Gorilla In Your House from This Is My Blog (batsgirl)-All I can say is it's perfect. I read about the Gorilla Theory on Ouch before batsgirl posted it on her blog, so I knew all about it already. I loved it then, and I love it even more now. It's the best metaphor for disability that I've read since the Spoon Theory. In fact, I might start using the Gorilla Theory in my posts soon. As in, my gorilla draped itself across my knees today. Confused? Go read the post!

Don't Enable An Ableist from Wheelie Catholic-Brought up a really good point about how when we hem and haw and make excuses for an disablist (or ableist) person, we're just as bad as they are. I must admit to being an enablist a few times, but no more!


On Being Disabled and Feline from Betty's Catster Diary-this is the blog of Lisy Babe's cat. Absolutely hysterical, and does point out some issues that disabled animals (or more specifically, cats) might have. Being a cat lover myself, I just had to point it out.

This Is A Person from DotComMom-It amazes me how casually people remark on this subject, as DotComMom mentions in her post. Apparently, terminating (*cough* *cough* killing) a baby with disabilities has become so routine it's almost boring. Ho hum. We're not a broken toy that you just throw out. We're people, same as every person on this planet. How would you like it if someone had killed you before you were even born, just because you had a certain color hair or eyes? It's bordering on genocide, if it isn't already. I wonder how many babies are killed before they ever get the chance to live, just because they're disabled?

That's all for now, back to the homework. I'll post more later if I find some more good ones.

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