Showing posts with label disabled adolescent. Show all posts

Maybe it bothers me because I am not comfortable with my physical self, not completely anyway.

Although I have written before about what I would like to tell that other person who is staring at me, and what I actually do tell that other person who is staring at me - I don't think I have written about why exactly it bothers me. So that's why I started off with the sentence that I did, just to .. you know.. get it out of the way, and to just put it out there first.

When people stare at me I feel wrong and out of place. Let's be very clear right now: It isn't that I don't like knowing that I am different (and that others notice that I am different) - because that is not the same as feeling wrong. In my opinion feeling wrong is a much worse feeling than being different.

Being different isn't really something that is new to me. I have more or less always known this and it's just what my life is. It hasn't always been easy, but at the very least I have always known what I am getting myself into when it comes to being different. I've had at least two decades worth of practice at being different, and probably many more years of it to come! I have had practice at figuring out how to be different, how to enjoy being different, how to be comfortable with being different, how to fail at being different, how to find others who are also different.. the list goes on. What I am trying to say is that I have had the privilege, and support around leading a lifestyle that is different from the majority. And on most days I am fine with it.
But when it comes to feeling wrong because someone is staring at me - there isn't always something that I can do about it...other than to sit out the feeling. Wait till that person continues walking on. Wait till they stop staring. Wait till I get used to something that.. honestly.. I wish I didn't have to become accustomed to. Or just ignore them - but that feeling, at least some residue of it, still leaves even some tiny tiny trace of it inside of me. I can adapt to being different, but I haven't always been great about adapting to feeling wrong. In fact I don't even know if I ever will be able to!?

I know, I know, I know that when people stare they don't usually intend to give off the impression of making me feel wrong. And because I like to give people the benefit of the doubt, I am sure most are just curious and maybe if I stopped to say "hi" the majority of those who stare at me are probably very nice! But that doesn't change the fact that initially they still make me feel wrong. Like one of those pictures little kids work on that ask them to figure out "what doesn't belong in this picture?" And usually in instances where I am being stared at the answer is always: me.

Here's why I think 'feeling wrong' when I am being stared at is not a reaction I want to be having:
When my friends who are also young women (without a readable disability) are being stared at, they do not feel wrong. Some of them feel like they are being wronged. And others feel like it's something of flattery or a compliment, a positive thing! But rarely have they ever commented on their individual selves as feeling like the error at fault.

To get back to where this post began: maybe it's because I'm not comfortable enough with myself in a physical sense, that I feel wrong. My lifestyle of being different has lead to many failures, but also one of some success. There isn't anything wrong about being different. It has been challenging at times, but never wrong. I have yet to find that similar sense of accomplishment in my physical presence in a way that makes me confident and proud of it. Certainly it isn't measured by the relationships I've been in, or even the dates I go on. It's not really found in how many laps in a pool I can do. It's not in way that I can ambulate myself around the house without my wheelchair.

I cringe because there are no answers in this post. I'm not sure where that feeling of righteousness will be found, but I'm pretty sure that continuing my lifestyle of being different will get me there sooner or later. Damn I sure hope so.

My goal at the end of this entry is to figure out why I was so scared of, embarrassed by, distancing of, and well, on many days just downright pissed off by my disability as a teenager. So here we go.

It wasn't just that I struggled privately to fit in. So privately in fact that when I broke my ulna getting a snack out from the vending machine, I went and told my favorite teacher first before going to the nurse's office.
The sleeve of my t-shirt caught on my joystick as I leaned forward to get my snack out. I rammed face forward into the vending machine, I felt the bone crack, and I'm sure if anyone in that cafeteria was paying attention - I'd quickly become the laughing stock of the high school in no time! But no one was paying attention as I discreetly untangled myself. Immediately my gut instinct was: I can't tell any of my friends about what just happened, not even my best friend. I need to tell an adult I can trust, someone who will not be annoying and freak out in that annoying way. For me that person was my 9th grade English teacher whose class I had the next period. I slipped into his empty classroom and told him, quietly. He looked at me and told me to stay put and then he left. (To get the nurse, and presumably to tell her to not freak out in that annoying way...) I sat in the empty classroom and read ahead in Catcher in the Rye while I waited.

The point of that snippet isn't just to explain that every kid needs to have a trusted adult, not just in their lives but in their school! That memory also serves to illustrate how I wanted to fit in so badly that I risked being in pain for fear that my friends would find out what they already knew: that I have a disability and that my bones break easily. Of course the sequence of events now doesn't make sense to me, but it was crystal clear in my head at the time.
I didn't want things to be a big deal. I didn't want things to be bigger or more noticeable than whatever impression my wheelchair, or my hearing-aids gave off. And those impressions as far as I was concerned were all negative, or on a good day they were at best 'awkward.'

Why was this?

It's beyond the fact that I didn't see or know anyone else who used a wheelchair like me. It's about more than just having always been the only kid in a wheelchair at school. I believe this because at that age I'm pretty confident that even if there was another kid in a wheelchair, the last thing I would have done would be to befriend them. Because the thing is I hated being someone with a disability at the time. It's not because I was ever bullied for it - (because I was that kid in school who had a swift and biting comment for everyone, unafraid to mouth off with a smart aleck comment at both peers and teachers.) Now that I've popped enough zits, taken enough standardized tests, found the right balance between deodorant & perfume to claim my scent, and been on enough angsty teenage dates where we never left the car.. I think that I can shine some insight onto why I was so despising of this part of myself:

There was no place or reason for me to feel proud of my identity as a disabled young person. The environment that I was in (by no fault of their own!) just didn't have a place where having a disability would get me more friends, earn top grades in class, be invited to parties on the weekends, get me into college, allow me to earn my driver's permit, or even something as simple as just talking about it. Instead it was just some label that as far as I was concerned, sent me to the nurse's office or got me picked up from school early to go to my orthopedic's office. It was just the reason for why sometimes I got to skip Spanish class because I had physical therapy. It was the reason for why I had my own gym class where I was either doing cardio, swimming, or playing badminton - by myself or with the Adaptive Phys Ed teacher.
Thinking back on it now I realize that at that time, even if it's with just one other friend be they in real life or online - it matters a lot that there was some kind of space or time where a teen might be able to feel proud of the various aspects of who they are. Maybe it's debate team, maybe it's the school play, maybe it's on the soccer field, maybe it's online with video games, maybe it's at temple or church.. but at the time I hadn't found a space to feel proud of being disabled.
Not knowing what else to do with 'being disabled' aside from treating it with surgeries and casts - I found it easier to squelch and hate it. It's true what they say, it's easier to hate something than to love and understand. Too easy, in fact I realize that now. Being disabled wasn't what made those four years of high school so difficult and miserable, it was the way I saw 'being disabled.'

Thoughts of what may have been or could have been don't really serve any purpose for me. Instead what I can do now is to write honestly about my experiences when I was a teen. I can be involved in youth programs through Easter Seals. I can wear an awesome Don't DisAbility t-shirt.. because who knows the impact I might have by being visible, and creating that sense of pride no matter how small it might be.

Readers of the blog know, by now, that I don't hate that part of myself anymore. It would be great if every young person with a disability could say that about themselves far sooner than I did.

I've learned from this that sometimes it's harder work to find where you fit in, but you can be sure that when you do put that effort in - you won't ever lose out. You won't.

*It's bad to make generalizations, I know. So maybe if you think my title for this post is inaccurate or just wrong, feel free to hit me over the head with your reasons in the comments!*

1. Don't judge by the picture.
Raise your hand if you've been told "well the x-ray doesn't show a break..." or something similar? Exactly. We know there's more than meets the eye whether in the diagnosis of a fracture, or in meeting someone else, or when we pick up a book. There's always something more and while we might not always be patient about it, we're willing to bet that there's something else waiting if we give it a chance.

2. Time is the surest medicine.
Sure drinking milk can't hurt (unless you really can't digest milk), loading up on calcium pills, and doing everything your physical therapist tells you will help.. but many things somehow right themselves on their own schedules and routines. My body healed when I was downing another glass of milk and while I was doing homework in bed; it was doing its magical thing while I was going about my day; it didn't really need my nagging for it to pick up its mess while I was cleaning my room. Funny isn't it? How the most reliable thing our body needs isn't really something anyone has anyone control over? Time.

3. Don't pat me on the head.
Because just don't. (Unless you are 80+ years old, somehow related to me, and don't speak English or any other language I also speak... maybe I will allow it. Maybe.) It's like this: Some people have ceremonies like a quinceañera, or maybe a bar- or bat-mitzvah, or others might be given car keys as some kind of ritual acknowledging they are young adults. Many people with O.I. go through a ritual where the moment it is like so not okay to be patted on the head is a coming-of-age too. Most of the time there is no party or big hoopla, or even presents! It's just a look, a tightening of the gut, an eery clench of the jaw, the horrified thought: what the hell was that? And that is just one of the ways we know the kid-stuff is like so, totally, absolutely, positively over. 

4. "Yeah, I get that a lot."
Maybe it's the gazillionth time we are asked that question but most of us figure out some type of 'fall-back' answer. The question could be: "why are you so short?" "Why are you in a wheelchair?" "What happened to your leg?" "Why is your head like that?" "Why do you sound so young?" But we all eventually figure something out, something to say - an answer we use and reuse. It's not because we are necessarily bored by the questions, but it's because we become so confident and proud of the way we live our lives that explaining that small part of it isn't really an issue.

5. I'm not stubborn, I'm just right.
Don't try to tell me that tractions are the way to go when I have a fracture. It might be for you, and that's all well and dandy for you, but not for me. Don't try to tell me that I should just get the anesthesia through an IV and not the mask, because that's just not how I roll. And definitely don't try to tell me that weather isn't a factor in my bone pain because I can be more accurate than the weatherman! We just grow up knowing things about ourselves that others just don't. And maybe it is a fear of the potential pain that might be involved, but by golly we are going to stick to our guns when we figure out the answer.

6. Little kids just 'get it.'
I have yet to have a young child come up to me and talk to me in that honey-gushing-squishy-wittle-crouch-down-to-me voice. Sure, maybe it's because many of them are around the same height I am. That's not the point. The point is, there hasn't been a kid who has been condescending to me in the way (well-educated) adults have. I might look small but there is something in their stares that has told me they get it. It's like oh, you're small too but you know things that I don't. It is a look that confirms my size has no bearing on whether or not I can say the alphabet forwards and backwards, or whether or not I can help them tie their shoes, or get them out of a stuck zipper. Sometimes I wish adults could grow down a bit, y'know?

7. Breaks don't brake us.
While I don't wish it on anyone, many of us will have those fractures that leave us horizontal for days. The kind of fractures that have our stomachs in knots from the pain medications. The kind of casts that leave us so stranded that we need assistance just rolling over. But what I do wish on everyone that such breaks don't put the brakes on our lives.

8. Staring at me is not staring in me.
There's the side glance, the not so subtle corner-eye-ball, and the deer-in-headlights gawk. They are all varying levels of awkward and depending on our mood that moment exhausting, or just totally whatever. No matter how hard the other person might be scrutinizing though, whether through some x-rays or just passing by us on the street they can't ever get inside of our heads. And maybe that's a good thing, for them!

9. Trying again has more to do with the trying.
My first fall off of my tricycle resulted in a broken arm. And I was indoors, racing around my house! Yes my parents bought me a new one, the kind with a seat that had a back to lean against, and handle bars with better grips to it. But still I was terrified of riding it, the memory of breaking my arm was still fresh and I was not convinced this bright new pink bike would prove fracture-less. The thing was that it wasn't. I did break my leg (or maybe it was my arm?) from riding it. That time I was outside! The thing is that yeah, we get it, there will always be other opportunities. But it's the trying that's tough, the trying that allows opportunities come again and again.

10. It is easier to be different than be uncomfortable.
I don't know what there is to say about this one because maybe it's this one that is newest for me. But I will grudgingly admit that all through high school I spent so much time and energy trying to be less uncomfortable with myself. Because the thing is, difference is something someone can accept but discomfort leaves a person in limbo - always working to resolve the problem. We can also look at it from the perspective of someone else who might be uncomfortable with our differences: they are the ones left with the confusion and questions as we just continue with our lives.

As one of the lucky ones who managed to wave a red flag with a large question mark while in womb, I probably don't realize how lucky I am (or was). The doctors who caught sight of fractures and healing fractures in an ultrasound were alerted that something was up. From there I imagine a plan was set into place, possibilities were considered, tests were proposed, and above all caution was urged towards its slow plodding momentum. Mere days after I popped into the world that red flag had toned down its alarm, there was now a name for the little piece of land I claimed: Osteogenesis Imperfecta type III.

Having spoken and met with many other O.I.'ers I know that this isn't the experience for many of you. I have read the other blog posts about babies who are taken away from parents accused of child abuse. I've seen the frantic facebook posts in many of the O.I. groups from parents, grandparents, aunts & uncles of those crowd-sourcing for resources to come to a diagnosis faster. Heard from parents about the months their family spent waiting for the results from the battery of tests, realizing that any result would bring some relief. All of this for the sake of a diagnosis, for clarity, for a label, for a definition, for answers that are a little less vague.

When people ask me if it matters whether or not they refer to "the thing that you have" as a condition, disease, illness, syndrome.. I am quick to respond "yes it matters a lot to me." Because of all that my parents went through, because of all that other babies with O.I. have gone through - yes it matters a lot to me.

But now that I am older and have grown out of the confines of those bullet-point symptoms of O.I. type III, I sometimes wonder if the labels only matter a lot to me because those around me have made it matter.
Something tells me that as a day old, or even as a one or two year old infant -- the idea that my upbringing was wrapped tightly around the fingers of a diagnosis was about as important as saying "excuse me" after I was burped. I simply had no clue. O.I. type III was important to my parents, my medical team, my care takers and those who loved me. Why? Because they were the ones who were responsible for my safety and wellbeing. And it probably wasn't until half-way through elementary school that I had some idea of why I should talk to my classmates about my differences. It was important to me because my teachers, classroom aide, and my parents said "this is a good idea for you."

To be totally honest, O.I. type III probably wasn't something I really considered a part of my identity until I began this blog in May of 2011. Up until that point it was just a way to take care of my medical needs. Now? Now I think it's something I'm fiercely over protective of not because I'm afraid of losing it, but because I know there is so much I have yet to learn and I stubbornly want to do it all by myself! (Picture the first time you are baking your family's secret recipe. You've done it so many times with your mom, your dad, or your grandparents -- but this time you demand total control. My family has done enough and all that they possibly can, now it's my turn to finish this off.)

Let's also keep in mind that for me the label O.I. type III and the label "disabled adult" are two very different concepts in my mind, at least for where I am right now! There are distinct values and experiences that define my identity as someone with O.I. type III, and a wholly separate experience that define my identity as someone who is disabled; what's important in this instance is that 90% of both of these identities are shaped by my own experiences, and how I have interpreted them. While there are many areas where these two identities overlap I think there is a lot of personal pride that I'm comfortable enough with myself, finally, to identify strongly with both.

This isn't meant to belittle the value of a medical diagnosis. It also certainly isn't meant to influence anyone in one way or another, this is just me trying to make sense of the jumble that is me inside my own head; and to think that this is only one slice of all there is to me!
But I will say that for the parents and family who are raising the child with O.I., go ahead -- cling to the diagnosis and consider everything that your child's medical team believes is best. Cling to those definitions and labels, do whatever you have to do to come out the other side of tomorrow with your sanity intact... but realize that eventually, if everything goes right, your job will come to an end at some point and the diagnosis won't be up to you to cling to anymore. Instead it'll be your child's decision to cling or mold, or set aside, or even toss it away. I don't know anything about parenting, it's true, but I do know that when that happens you've done something right.

Everything got weird for me around seventh and eighth grade. My breaks began picking up in pace again, I was confused about my friends - the girls whom I wanted to be friends with vs. the girls whom I felt I should be friends with; also there were boys (and since when are they never weird?), I wasn't sure if I had all the coolest Trapper-Keepers and neon colored pencils, and my collection of Pogs was still something I went home to play with. Oh yeah and umm... my body was being more awkward than it already was. Every day it seemed like I woke up to a body that became a little bit more of a stranger to me. And there I had been thinking but no one knows my body better than me!

Ugh puberty. Even as I write this my face is cringing. Why do our bodies pick the most uncertain time of our life to morph into more certain beings?! There are some things that were just meant to be purposely confusing and never make any sense, like ever.  

Before puberty my body was already strange, but it was a strangeness that I had known since birth. It was a strangeness that I understood and I could point to certain bowed areas or limbs and tell you a story behind each; and every story had a happily ever after ending. During this phase it seemed like every part of my body was beginning in the middle of some random Choose Your Own Adventure book except I never got to choose where it would wind up. Someone else was choosing for me. And every morning I woke up pleading can I just have ONE say in just ONE thing PUHHHLEASE?! Always to no avail.

As strange as this time was for me physically, I did find some odd comfort in the fact that all my friends were going through a similar weirdness. Finally, our bodies had something in common even if it was the most disgusting awkward commonality ever. I could deal. I went to a school system where the unit of 'Our Growing & Changing Bodies' was addressed in science class in the 6th grade. Vocab lists for each unit consisted of words like: fallopian tubes, uterus, urethra...and we were quizzed on the menstrual cycle like kindergartners learning how a chick grows in an egg. My friends and I would giggle in the back of the room; if ever you wanted to see a classroom chock full with invisible Berlin Walls between every boy and girl, just go to any middle school class that has a similar curriculum.

My parents signed the permission slip that allowed me to participate in the class. I come from a culture that just doesn't talk about human sexuality, so you can just forget about that conversation with my parents because it never happened. They sent me off to school probably hoping that all my brimming curiosities would be fulfilled. So I sat there trying to keep up with the worksheets and fill in the blank quizzes, and yet I still felt like I was learning about some species Earthlings had just discovered on Mars. The 'growing & changing' bodies of girls on the worksheets never looked like mine, the books we were given had arrows and labels stemming from the pictures that meant nothing to me. When I tried to over lay those pictures on to my own body it was like trying to navigate through the Bermuda Triangle with a map created in Australia - everything seemed misaligned, backwards, and destined to point me towards some lost vacuum in the sea.

I'm not sure when it was that I finally decided to hell with this, I'm just going to let it happen whatever it is. But at some point I did. It was probably because after awhile I decided I can't keep up with trying to figure out everything that my body is doing. I've never been able to explain every aspect of what's going on, it was like trying to ask my parents why do I have O.I. and no one else in our family? The answer is: because that's the way it is, and that's just how it happened.
After the initial two or three years of awkwardness things settled back again. Sure I had to get to know myself in my own skin again - but when I looked around I realized it's what everyone else was doing too and it seems that's ultimately what puberty is all about.  

Already? Again? I mean I know it's supposed to happen because you were born with this - but no one said anything about breaking in rapid successions.

Doctors and pamphlets only ever have phrases like "fragile.." "may have more than a hundred fractures before adulthood..." "bones are prone to breaks..." They don't ever say things like "after you break your femur because your elbow slipped off the desk and landed on it wrong... you will then break your other femur in some other random freak accident, five weeks later. Oh and you will be 13 years old. So while your friends are all experiencing growth spurts and changing shoe sizes every month, you'll be changing casts instead." No one ever says that to you. You're just supposed to realize that on your own. 

And I know that your parents told you about how you broke every month when you were a baby, but that was when you were much younger. That was back before you had any real memory, those fractures are filed away in the hospital's memory - they can be found in slides 1-58 in Volume I of Patient X-rays. Those are not burdens that you carry, so when your parents say things like "it's happening again..." you sit there silently wondering "but what's happening again? Does that make it any easier for you? For me?" And you'll realize, on your own, that the answer is no it doesn't make it any easier. Not really. This is when you realize how lucky you were, in a weird way, when you were much younger and have no recollection of what was going on. You'll realize the meaning of the saying ignorance is bliss. 
Perhaps this is when you start to think about how unfair things can be. You might even begin to think about how little choice it seems you might have, in the grand scheme of things. You didn't get to choose whether or not you'd get this particular gene mutation (because no one did). You didn't get to choose whether or not you'd break a bone in the middle of your favorite class (because why couldn't it have been math instead?). You didn't get to choose whether or not you'd break the same bone that had just healed two weeks later. And you certainly don't get to choose how long it takes before you are healed again. The list could go on about all the things that you didn't get to choose to do or have happen. Here's a secret though: It's the same thing for everyone, just a different set of choices they don't get to choose. 

But that's not what any of this is about - in the grand scheme of things. People don't brag about all the life choices they don't get to choose. People are not making lives and futures from the choices they had no choice in - progress is made from the decisions we do make. And then you'll realize that there are always options. For every choice you don't get to choose, there is at least one other choice that you do get to have the option to make. It's a one-to-one ratio. So for every bone that breaks we have the option of taking care of ourselves in order to heal faster. We have the option of continuing our day-to-day routine the best that we can. We have the option of learning from our mistakes. We have the option of now remembering what our body can and cannot do. We have the option of gritting our teeth and toughing it out. We have the option to decide that this is not going to be a reason to stop.

In the mean time just remember that doctors and pamphlets will always tell you things that you must know. That's really all the job of an "official authority" boils down to. They might not always tell you what you should know. That stuff you probably will have to realize on your own.

Be well,
Sandy

The high school cafeteria swarmed with new and unfamiliar faces. Teachers milled about but only for the sake of being there because everyone knows that this is the place where every teenager is for him or herself. As a 9th grader I was a new student, but I was totally new - my family had just moved into town during the summer between 8th and 9th grade, I knew no one and more importantly no one really knew me.

Often I am asked how I explain my disability or what is it like to have a disability. It's times like those that I wish I could just utter the definition of what disability means and be done with it. But I know rambling off some definition I got from some other source would be an insult to myself and others; besides, I also know it would be too limited in scope, too simple. That's what I'll attempt to do here, define 'disability' on my own terms.

Since I live with a disability I've never looked up what it means in a dictionary. I already know what it means because I live with it, it's a part of my life. However, before I go reinventing the wheel it's important to know what already exists out there. So when I turned to Dictionary.com for a definition of disability (for the first time in my life) I found myself taking a few deep breaths as I read what it said. My immediate thought after reading the definition was what a superficial definition!! The word has a thousand more forms than just being a noun, plural and singular. And it is certainly much more than just the 'inability to do..', 'the condition of being unable to..' or 'an incapacity...' But it wasn't until I got to the part where it said Antonyms: 1. ability, capacity that I began to get angry, furious even at the blatant inaccuracies in word choice. Reading the antonyms made me angry because it seemed to insult my entire existence, my entire life, and the person that I am growing to be.
The way we define our words is a direct reflection of our society. Disability, like the terms race and and culture, is a socially constructed concept. How does society view disability? How is it treated? What is being done about it? The answers to these questions and others shapes how disability is defined. For the most part the society that I live in treats disability as a social obscurity and medical anomaly; it is seen as something that society seeks to provide aide for, or to benefit. Examples of this: This is an event to benefit kids with disabilities.. The school has Special Ed. classes for students with a learning disability.. or That's an organization that provides various services for those with a disability.. Needless to say, by and large, someone with a disability is usually equated with being the recipient of services - medical, social, government, or otherwise. After I thought about it, I realized no wonder why antonyms for the word 'disability' are: ability and capacity. 


But just because it's written that way doesn't make it right.

So I propose a mental shift. And not just in the way that we think of people with a disability. In order for a social mind shift to happen the change in perspective needs to affect everyone, but especially those in the majority of the population. In my two decades of living with a disability, I can boil its meaning down to one word: challenge. A disability means that I have something that challenges myself, and it challenges everyone that I come across in some way small or large. Instead of seeing myself as the recipient of help, services, aide, charity, etc. I see myself as offering an opportunity to challenge others and to continually be challenged myself. With that said, here is my personal working definition of disability -- something that I am sure will change as I learn more about myself..

dis·a·bil·i·ty 

1. a challenge a person may have been born with, or may have come by through an injury or accident, or other trauma 2. a state of being that is outside the norm, exceptional 3. an opportunity that welcomes challenges to expectations and standards 

In middle school everything I did had to be "cool." Everything from the clothes I wore, the friends I had, the pop songs I belted out, and even the eye rolls that I perfected had to be cool. Given that I had all the legal rights and power bequeathed to someone between the ages of 11-13, "wanting nothing to do with something" meant I threw it into the dungeon underneath my bed or banished it to the dark corner of my closet. It was one thing for me to beg my parents to buy me the latest Airwalks and Vans sneakers, but when someone else forces an image on you - well, usually it doesn't go over too well. Especially if you try that on a 13 year-old middle school girl...

I had changed into a t-shirt and black and white Adidas shorts, I laced up my size 10 Nike sneaks and rolled into the gymnasium with the rest of my P.E. class. And that's when it smacked me across my face: My adaptive P.E. teacher was standing next to it, actually he was towering over it. There it stood in all of its plastic, white, blue, and orange glory: a 4ft tall PlaySkool basketball hoop. I looked at it in silence and for a few seconds no one else existed as I tried to comprehend what was going on. This is not cool. This is absolutely the opposite of cool. This is for babies. I am not a baby. I am more than this, so much more than this.

My friends and the rest of my class all trooped over to the other P.E. teacher, all of them sitting in a circle learning the basics of basketball and how to dribble. Kneeling down, my P.E. teacher tossed me a plastic basketball a little larger than a softball and instead of catching it I fled.

As I wheeled around I heard the ball bouncing on the shiny gym floor and that was the last time I saw the thing. I gunned my power wheelchair out of the gym, down the hall, around the corner, and into the nurse's office. I was humiliated, embarrassed, distraught, angry, confused... and so many other things that, like many other 13 year old girls who get upset, could not clearly put into words.

Okay, let's do a reality check. Despite being smaller than my classmates, and having an aide that I regularly (purposely) ditched while going through crowded halls, I was treated exactly the same as everyone else. Yes, I had help with some things but the adaptation or accommodation was (for the most part) seamless. The special needs that I needed were as cohesive as possible with whatever else was going on. I thought that this is how my disability should be treated. It was invisible, and that was what I had come to expect, it was what I wanted for my disability.
So on that day, without warning, the sudden blunt change was a bit too abrupt. To me that Playskool basketball hoop said "everyone sees you are different, you are small, you are weak, you will always be childish, we will always see you as a child..." And to have the hoop off to the side from everyone else and next to my adaptive P.E. teacher only, in my mind, underlined that difference for me.

For the rest of that Phys Ed. unit on 'basketball' I was allowed to spend it in the library. It took quite a bit of back-and-forth "communication" between my guidance counselor, my P.E. teacher, my parents, and my doctor. But even to this day I'm not sure if any of the adults actually recognized what it was that bothered me, I don't actually remember if any of those 'in power' bothered to ask me what it was I hated so much about it. After that day I learned that while not having to deal with others' image of me was a possibility, I would probably need to learn how to manage it better, and do so on my own. It wouldn't be until years later that I would be better at navigating the image I have and the image others assume for me.

Generally speaking I am not a fan of labels at all (see my past entry about OI labels). But name-calling and verbal bullying is a form of labeling in its most loathsome state; this is a kind of labeling that isn't used to distinguish so much as it degrades, and it doesn't serve as an identifier so much as it discounts. Even if you don't have kids yourself, it's hard to ignore the anti-bullying efforts that have gone viral across social networks, mainstream media, and appear in headlines on a regular basis.
What's poignant about these anti-bullying efforts are the perspectives that they are coming from. Sheesh, can't believe I'm about to utter these words... but... Back when I was a child, anti-bullying efforts came from ridiculously cheesy cartoon characters, or adults who simply told us to "say no!" Or "don't say anything if you have nothing nice to say!" Now the efforts come from targets themselves - individuals who have taken the situation into their own hands and decide to rise above their abusers. We are only beginning to become a society that is able to look at its uglier aspects, even if it means we still flinch and want to look away instead.

The first times I heard the words "cripple," "crip," "gimp," or midget" were unmemorable. I don't recall the 'life-altering' moment when these words were first introduced to me, but it was probably around middle school that I knew these names existed (and isn't this the time when everyone else 'discovers' all the other insults??) No one else in my family has a disability, and I was generally the only student at school with a visible disability or used a wheelchair - with that said, I had no other adult or peer who would tell me the drawbacks and pitfalls of having a disability. I was very much my own lab rat. So when I first heard those words I didn't already know that they were negative connotations, it was the way the kid had said it in a jeering tone or a hushed voice so teachers wouldn't hear. But still, it took me a few years to fully realize that such language (especially coming from someone without a disability) was insulting and not to be tolerated. It also took me awhile to figure out what the words meant, and when I figured that out on my own - I simply decided that I didn't fit those terms so I wouldn't let it bother me.
When someone calls me a 'cripple' I see it as a descriptor of only a tiny slice of who I am. In my mind those labels don't apply to me because I simply don't associate myself with them. I'm too small to ride on most roller coasters but I'm too big to be captured in a one word insult. What can I say? I'm a dynamic person! When someone says that I'm a 'midget' my gut reaction is to say no shit I'm short - good observation skills Sherlock. How about you tell me something I don't already know? Usually it's not long after that the person realizes I'm a 'midget' who will readily give you a swift word lashing if you irritate me enough. Over time I have been able to accept my disability, whether or not I'm consciously aware that I'm even doing so. Being able to do that, in my own way and at my own pace - has helped me build a better sense of myself and identity so that when I am called names, my foundation is not as easily rocked. I've continued to work hard at understanding what makes me Sandy; it will take a lot more than a bunch of ignoramuses throwing around names to undo that.      

Having any kind of disability isn't always the most stereotypical beauteous thing to have. At least not readily, not when the disability is seen by itself, not without some self-produced effort and conscious decision to accept the disability. But acceptance takes work, it takes time, it takes failure, it takes strength.. and all of the other most difficult nuts and bolts of life that a person encounters in one lifetime. I believe that this is why so many resort to rejecting somebody's difference so quickly; simply stated - it's just easier to reject the difference than it is to accept. Just slap a label on it and shove it into some other crowd, or program, or institution and society doesn't have to look at it again for at least another 10-20 years.
But as we've seen throughout history, it's becoming increasingly difficult to just 'slap a label' on something and try to suppress the voices. I guess that the point of this ramble is that addressing bullying issues isn't just about understanding the need for equality, or inclusion. It's far more than the physical safety and mental sanity of our young people. And it should always be about more than the liability of the institutions that these incidents happen in. When we seek to address bullying in our schools (and elsewhere), I hope that there is some aspect of creating a space where every child is able to discover those tougher 'nuts and bolts of life' that I had mentioned above. Call me an idealist or what have you, but I believe that given the chance and opportunity - every young person has the ability to accept, no matter how difficult that process may be.

We can all make acceptance a way of life and not just an ideal we strive for, or a campaign platform we lobby politicians to provide legislation to. Every one of us has something to accept about ourselves; so let's stop wasting time doing something "because it's easier" when it's only robbing us of time we should be investing in something of far more value: bettering ourselves.

My friends enjoy teasing me for these and I have come to accept that I cannot go anywhere without at least one awkward moment.


1. Don't text and drive. Even if it's your power wheelchair. One time I was busy texting and soon found my head met the rear-end that belonged to a short old lady.

2. That time I only had 3 wheels on my chair. One of my rear wheels had fallen off - allegedly because one of my closest friends had been sitting on the back of it too much and it took the wheelchair company WAY too long to get a replacement part. The day that wheel fell off I had a mid-term in one of my classes and when my professor saw me she thought I was insane for rolling the 7 blocks to make it anyway. And trust me, if THAT professor was calling me insane.. then I guess sometimes my judgment can be really questionable.

3. Classy goes messy. It was a school tradition that the President served students breakfast. There were lots of administrators, deans, professors and tables stocked with food that had been nicely decorated. A corner of the tablecloth to one of the buffet tables got caught in my tire and BAM... onto the floor go an entire plate of cannoli's, pancakes, fruit.. I looked around and all I could say was "I guess the 5 second rule doesn't count?"

4. Painfully speechless. The editors of the high school newspaper were called in for a meeting that morning and there were bagels for us. It was an important meeting because we were having personnel issues and as I went to bite into my bagel - for whatever reason - the back of my jaw snaps. I sat for the duration of that incredibly tense meeting with my mouth shut, an un-chewed bite of bagel in my mouth, and just nodded and said "mmhmm" the whole time. Later on after school I went to the ortho and found out my jaw was broken - no fun at all!

5. The Claustrophobic Aide. In 9th grade my aide was claustrophobic. The reason why the school had hired her to begin with? So that she would go in the elevators with me as a preventative measure in case I got stuck or the elevator broke. Did I mention? She was claustrophobic... which means she never went in the elevators with me. Instead she would meet me at the next floor in front of the elevator doors and listen to make sure it was still running. Now that I think about it.. this incident deserves its own blog entry. It's an epic tale of youthful rebellion: The Time Sandy Staged a Coup & Got Rid of the Aide ;-)

This week I got back from the Easter Seal's Explorers Camp in Maine and hit the ground running with loaded entries! Miss any of'em? Check them out here:

• Monday: I started the week off by writing a Post-Camp Letter to myself summing up my week away

• Tuesday: It wasn't until recently that I thought about how my self-image has changed over the years. In this 2 part series post I wrote about my self-image from childhood to high school

• Wednesday: Part 2 of "My Evolving Self" was a tough entry to write but an important one nonetheless!

• Thursday: Originally written in 2003 by my 10th grader self, it was then published in the OI Foundation's Breakthrough! "The view from the bottom..."

• Fracture Free Friday: The line between staying safe but having fun can be a difficult one to manage. This week I give tips on how to make the decision process a bit easier! 

While writing the post about my self-image and self-worth in high school  I struggled with accurately remembering how O.I. impacted how I saw myself. I could only remember my behavior and the things that I did, not my actual thoughts. Well....
I dug through the archives of my writing and found an essay I had submitted to the OI Foundation in 2003, I was a sophomore in high school. I've reproduced it in its entirety below and after I read it the first time in 8 years I was stunned!

My friend from college was visiting earlier this week, I shared with you my slightly unhealthy obsession with Green Day, and wrote about the time I escaped from school grounds! If you missed any of the posts just check'em out below:

• Monday: No kid ever intentionally wants to cause concern, injury, or worry. One time I left my high school without anyone's knowledge or permission and all I could say to the school nurse was "I Didn't Mean To." 

• Tuesday: The First Fracture I Ever Remembered involved some neighborhood kids. I don't remember what bone I broke or how long I was in the cast for, but I did take away some life long lessons from the incident!

• Wednesday: Music has helped me get through some tough times. I asked my readers and twitter followers what songs are on their FracturePlaylist and compiled a list. Also through in a few of my own!

• Thursday: My friend from college was visiting earlier this week and on the way home from dinner one night she pointed out how I expect others to treat me. I'm just used to THAT voice. 

• Fracture Free Friday: This is a question I get asked often "Can you grow out of your brittle bones?" And don't forget, if you ever have a question you'd like me to answer just send me an email oi.perfect@yahoo.com 

WHS was the kind of school where no kid would ever get lost in the shuffle. The school was tiny and the population of students inside even tinier. It was safe, cozy, New England style 'quaint,' the janitors recognized every face, and the librarian knew which forgetful teenager had yet to return which book. In a large binder in the Attendance Office, anyone could easily look up any student's schedule and find out where s/he was supposed to be. Only juniors and seniors were allowed off campus during their 90min 'free blocks' and even then you had to have signed parental permission. It wasn't just a school where everyone knew who everyone was, you could technically also know where everyone was.