Showing posts with label disabled teens. Show all posts

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.

There is a saying about how the bond between parent and child is strong, unbreakable, the closest. While my parents have no idea this blog exists, and talking about "what it feels like to be the only one.." wasn't exactly dinner table conversation (or any kind of conversation ever) - I believe that bond is true for me. This reflects not just the wholly dynamic and complex relationship between my parents and I, but goes to show that the differences in my genes isn't enough to get in the way of anything.

This doesn't mean that there were not some rough moments from my perspective as the child of able-bodied parents. There were definitely incidents that I felt isolated, times that when I look back are cringe-worthy and likeohmygawd so awkward.

I remember days of trying to clack-clack around in my mom's high heels in my walker. The plastic of my leg braces were wedged into the very tops of those points, where my mom's toes would come together snugly my toes remained rigid. The sides of the brace's plastic foot piece jutted out against the sides of her shoes, it was like my feet were rectangular blocks. It wasn't just that when I wore them the back of her heels still had room to easily fit a beanie baby or two, or that I wobbled precariously to the point where I just slid along inch by inch. My mom didn't have the experience of trying to look lady-like while wearing braces. And no matter how many reassuring words she could offer just didn't fill in that gap - it wasn't something that I recognized at that point, but it is something that I realize now.

Then there were those times when I would be plopped into the carseat to go run an errand with them: the bank to deposit a check, to the grocery store to grab that forgotten item, to the library to drop off books for return - quick errands that lasted no more than ten minutes. Instead of taking me out of the carseat, getting the wheelchair out.. I would remain in the carseat. "Read your book, I'll be out very quickly." And I don't remember if it was ever told to me directly, or if I just mistakenly overheard one of my parents saying: "it's okay if we leave Sandy alone somewhere for a few minutes, no one is going to kidnap a child who uses a wheelchair.. too much trouble." I didn't ask why or how come. To me it all made sense, and there was definitely a part of me that was glad for this logic! How come someone would potentially kidnap my younger brother and not me? How come not everyone knows how to fold and unfold a wheelchair? How come I would be too much trouble for a kidnapper? None of these questions, in my mind, really needed to be asked. I just knew the answers from the way my parents acted.

It took multiple instances of when I would be sent to lunch detention, and when my middle school guidance counselor would call home to say something like: "Sandy keeps getting away from her aide..." It wasn't until I simply ignored my aide for a good two months that my parents realized that unlike my older brother I was not getting teased, and I didn't feel like a 'loser,' and I wasn't embarrassed because I was a dork or a "teacher's pet." My parents went through their own days of classroom teasing but they couldn't tell me to stand up to my bully, were unable to tell me "go talk to the teacher.." because they had never experienced the awkwardness involved between a thirteen year-old girl and an aide breathing down her neck. The larger issue here is my parents weren't naturally able to help me figure out how much help is too much, and how to ask adults I "depended" on for space and boundaries. It was decided through a series of IEP meetings and meetings about "responsibility" in my guidance counselor's office that sorted everything out.

There are lots of other times that I can recall as well. The thing is that even though my parents were not able to give me first-person insight on "what it's like..." that is often not what's necessarily important, or what I needed most in those instances. What I needed most (and have always needed) is to know that my parents were always there to guide me, to help, to support, to explore options, and to just try to understand.

You are a miraculous thing. As a young girl and now a young woman - I'll admit that I haven't always positively acknowledged your worth, and ingenuity. This is a letter so that you can know how I have felt about you over the years, and it's also a letter for you to hold over my head on those mornings I say ugh I have to dress you again?! 

As a kid I felt bad for you. I put you through so much crap in those early years, seriously! Hey body, let's go race around the neighborhood on my bike today. Hey body, I wonder what happens if I tried to slide head first down the stairs. Hey body, let's show my guy friend just how hard I can punch him. Hey body, we're going to try rope climbing today. Hey body, let's dive into the massive 40ft wave pool! Most of those things were not the wisest decisions I have ever made and yet you went along with it. Most of those things wound up with you getting a cast put on somewhere, and all of those things were absolutely worth it. You're like my personal Magic 8 Ball: I rattle you around and moments later you reveal some truth that tells me how I should next proceed.
Then of course there's all the crap that all those other people put you through. And obediently you allowed it to happen, most of the time. Hey body, they're going to break you into 3 pieces and stick some metal in you. Hey body, he's going to bend you this way and that way to get a better x-ray. Hey body, she's going to make you break a sweat so you can learn to walk. Hey body, he's going to pick you up and swing you over his shoulders. And that's how I learned to trust, to know my limits, and to understand acceptance - because there are many things that happen that are completely out of our hands. So we can either be at peace with it or learn to work around that metal rod you rejected, after two years.

 You are my one and only, and it really wasn't until fairly recently that I have come to understand how to act accordingly. Sure growing up I was always told: "This is the only body you'll ever have, so eat healthy and take care of it!" But to a four, six, nine, or fifteen year-old time is limitless and opportunities are endless. We think that there's always going to be another occasion for a do-over, we can always take-it-back, or try-again... and while in many instances this is possible, since this is the one instrument and version of you that I have - I know I need to add to your uniqueness carefully. It's much tougher to erase a mark on you than it is to add, and no I don't just mean those things I add after the holidays!

There's petite, small, medium, large, obese, curvy, bell-shaped, pear-shaped, OI-shaped, type III shaped, type I shaped, average or above average... The labels that I can pluck out of thin air and give to you are infinite. There's pre-holiday and post-holiday, there's summer and winter - body, there's svelte and rugged, post-surgery and pre-surgery... there's media, ads, social expectations, "the ideal"... Quite frankly, body, I don't understand how you haven't cracked under this pressure! There have been many times when those labels hurt more than getting hit by a ball, and yet you haven't broken down from all of those categories. You've maintained being you. You've stayed true to your scoliosis, short-statured, long-armed, bowed legs, barrel-rib-cage, and easily bruised self. And even if I were to sit next to some other young woman with the same type of O.I., the same age, the same surgeries, the same hearing-loss -- you are still different, you are still you. This closeness and intimacy that you have revealed to me, and that has evolved over the years, is a little mind-boggling if I really let myself think about this.
I didn't always think about your differences in a total awesome-sauce spotlight. I used to be angry, jealous, and resentful of your differences. Sure, I'd think, it's easy to tell girls to love their body, to ramble on about girl-power - but does their body look like this? And is their body limited like this? There were never posters of a girl (delightfully clad in pink and pastels), jumping in a field of flowers and bunnies whose body looked like mine. I didn't exactly have anyone in my life I could talk to, and I'm certain that even if that space and individual were around - I didn't even have the words to express my confusion. Mom would just tell me things she "is supposed to say." My doctor would just talk about eating healthy. Teachers? Yeah right - like I was going to raise my hand in a class full of able-bodied peers to ask that. So I bundled you up the best I could, hidden under wraps of cool composure and a care-free attitude. It became a feeling that bounced around my chest, and then as I got older it vaulted into the upper spheres of my head where I continue to try (un)successfully to understand.

So here I am, writing this rambly letter to you. Is it a letter of apology? Not really. Is it a letter of thanks? Kind of. Is it a letter of explanation? Most likely. I wanted to explain where we are with each other. I wanted to explain that I don't always hate you, and I don't always love you either. I wanted to explain why I continue to be confused. Now I'll do as I've always done, as we've always communicated with each other - I'll wait for you to respond somehow in someway, and give me a small clue about how we can move forward together.

Patiently & respectfully yours,
Sandy