Showing posts with label disability self-image. Show all posts

This is a guest blog post from my friend K who talks about her ideas of being different and seeing different. She is much more gutsier than me when it comes to physical appearance, so I'm glad that I have someone a little more willing to let us in on her thoughts on such tricksy topics. 
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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.

I've always passed by the store in a hurry, its poster-sized prints of women with lips awash in a sticky shine, or women with lashes that curve blissfully like that of a hammock, are quite frankly, intimidating to me. Their glazed over beauty is something that I've always mindlessly watched during twenty-second commercials for the latest "anti-aging revitalizing face sculpting cream," as I refuse to believe any of their advertising ploys have sunk further past my pores.
So, what has sunk further past my pores? What is the foundation, the blush, the shine, the shimmer, the gloss that has been applied to the image of myself my brain projects? It's some form of the phrases below - some lightly swirled on with a brush for special occasions, while others caked on for daily application:
"You're beautiful." 
"It's inner beauty that matters."
"You're still so cute, you haven't changed at all!" 
"You're perfect just the way you are."
"You don't need to change a thing - you should just be natural."
"You don't need this, you're fine."

The point of this post isn't to say that none of the above is true, or that I plan to ever stop believing in any of the above. But I will say that by internalizing these statements well into my quarter-century years, I may be denying something some actual blush and foundation might reveal: I'm still a woman.

The truth is that I don't really identify with being a woman. The statement "I'm still a woman" makes me cringe, it makes me uncomfortable, I feel almost embarrassed. Why? Because I don't actually know what that means. In the year 2012 I am not barred from voting, it is not wholly surprising that I graduate from college and get a job, I am not expected to don an apron and raise kids behind a white-picket fence. For the most part, my life as a young girl or woman hasn't really been all that different from the lifestyles of the other women, or guys that surround me. My gender just hasn't been a big part of my life, not in any obvious ways anyway. And that might actually be the issue.

"You're probably not getting married, so you'll be independent. You're going to take care of yourself." I think I was in middle school or early high school when my mother told me this. If I recall, she didn't actually say it in a condescending or menacing way - it was like a fact. And because I didn't know any different, and nor had I seen (any other woman with a disability with a family) any different, I heard what she said and took it as fact. In my head I thought okay, so this is just something I should accommodate my life around. Just like I accommodate for my disability.

That mentality isn't wrong, but it isn't right either - of course, now, I know that it's not the whole truth. How do I know it? Because a twitter-follower I met during the OIF Conference volunteered to put make-up on me. Because I have been in relationships before. Because I have now seen, and know women with disabilities who raised families. Because Dr. Jen Arnold from the Little Couple on TLC shared her life on national t.v. Because there are shows like The Push Girls. Because I am helping to coordinate a conference for young and older women with disabilities in Boston. Because I sought out these other women who proved my original mindset wrong. And it's a certain terrifying breath of relief that they did: terrifying because I now have a lot of figuring out to do for myself. Relief because I know that there are many options I previously thought were not for me, now are - and, more importantly, it isn't because I am in a wheelchair.

Alright, I will try. I will try to explain myself during those moments I have had as a child, as a teen, and as a young adult. Maybe it will aid in clarifying the fog for that other person. Maybe it will help you understand why your spouse, child, friend, grandson is thinking these thoughts. Enough with the maybe's already, I won't know until I try:

"It's my fault that mom cries so much..." "It's my fault that we can't go anywhere fun this summer.." "It's my fault that dad has to work so much.." "It's my fault that we are taking so long.." "It's my fault dad has trouble lifting me and the cast.."
Why did I do this? Why did I think these thoughts? Because it was, and is, so easy. It happens with such speed and ease that when I really think about what just crossed my mind - it is a little disturbing I can get there that quickly.

When I was a child it was the simple explanation that would morph into some uglier thing in my head. The simple explanation was usually something like, "it's not safe for you to do this..." and of course somewhere in my screaming tantrums that translated to: "you have brittle bones and the consequence is you cannot do this." That wasn't the reality of the situation at all! O.I. was never used as a negative consequence when I was growing-up - it was never presented to me that way. However, in the world-view of a child everything is black-and-white; my perception of reality was clear-cut and concrete, I had no ability to think about anything other than what was five feet in front of me. So began the phase of "it's not fair!" 
Recognizing that something "is not fair!" essentially acknowledges that there is an alternative that would be preferable; however, that alternative is not attainable or allowable. In other words these were my teen years. For any thing I was not allowed to do my brain schemed of ways to do it anyway, just more hidden or away from prying eyes. My teen years were riddled with alternative-half-cracked solutions I jimmied up. But I did some of those things because it was my way of not having to deal with the reality; I refused to accept any part of me that prevented me from doing what everyone else did. In my mind I thought that if I did accept myself, I would be facing some alien I was too cool to give the time of day to. I didn't realize that facing myself wouldn't make who I was my fault. Whatever foresight my tunnel-vision managed to obscure did not let me see that my differences did not exist in order to be blamed.
Through some series of events and life experiences I got tired of playing Bugs Bunny. I got tired of always trying to escape from the traps, from being the clown with a trick or twelve up her sleeves - always at the ready to slip away. So I have begun to take the time to see what the heck is in the mirror when I look at my reflection. Some days it is easier to do than others; some days I am lazy and would rather not take the effort to grapple with what's in front of me. Some days I still mumble "it's not fair, if only I weren't..." and I get this immediate sense of coziness, because that is what I grew-up saying for so many years. It's cozy not because it 'fits' with how I see myself now, but it is cozy because that was a saying throughout my childhood - there is a great familiarity for me in that mentality. It's still so easy to do.

In between all of this, of course I had family, friends, teachers, etc. who said "this isn't your fault.." "don't think like that, you didn't ask for this.." "don't blame yourself, you can't help the way things are.."  And usually I would respond with a tireless huff and a long drawn out "I KNOooooowww-uhhh" like a foghorn warning away the obvious.. because I did in fact know I was not to blame; I knew that the explanation was much more complicated than that, and that it had to do with making babies, genetics, and other weird things.
But just as I eventually grew-up and learned (am still learning) how to accept/manage the things I get thrown, it might be helpful for someone out there -- if the individuals in that person's life... also learned to accept the reality of these thoughts. Because chances are that they will be thought regardless of what we are told by our loved ones. Acknowledging that such thoughts do wander in and out during various life stages just might help that person try a little less fleeing, and try a little more growing. Now it's your turn: You won't know until you try.

This title for today's post makes my face cringe. Whenever I hear it being said I have this internal instinct to want to flee from the situation, from the group of people that are talking, a few times I have even wanted to not 'be disabled.' An immediate disgust for this part of my identity overcomes me and I think this comes from shame, as well as confusion. Despite this discomfort when I hear "oh she's more disabled than you..." or "he isn't as disabled..." I have to admit, with head hung low, that I have uttered this statement more than a few times.

I have written before about why I am uncomfortable when others classify the severity of O.I. that I have. And that certainly has much to do with why I also dislike saying that someone is "more" or "less" disabled: who is to judge? How is it judged? How is severity measured? It seems not exact enough for something that, could potentially, be a hugely defining aspect of a person's identity. With that said, who am I to say "she isn't as disabled as me."

Beyond this it's also the whole messy concept of comparisons. The apples and oranges explanation aside - what are we saying when we compare our disability-status? In my opinion, it seems that we are first defining the benchmark for what a certain base-line of disability looks like. "This is what this level of severity means because I embody that..." Secondly, it also seems that we are setting someone else 'below' or 'above' that base-line of disability that we arbitrarily established. "She is more disabled than me because she needs... or can't.." Or we say "He is less disabled than me because he doesn't need... and can..." It's uncomfortable to me. Like when that random Uncle we have only met twice decided to show-up at our graduation, and then give us a t-shirt with the year he graduated from high school...as a congratulatory gift. Awkward all-around. It doesn't fit. The act of saying the words seem like a half-hazard gamble at best.

As I have gotten older I have tried to be more conscious and aware of the things that fly out of my mouth. I think that it is also the fact that, as I have gotten older, I have been more active in shaping my own identity! The attitude in which I have explored my identity as a disabled woman is in-line with the rest of my identity as a human being: independent, stubborn, forward-thinking, curious, enthusiastic, ambitious...etc. Putting those aspects of my identity together has left very little room to allow others to tell me how disabled I am. So, like my parents used to say, if I don't want to be treated like that then why should I treat others that way?

But I am not going to deny the reality of the disability community, and the way we speak to one another. The reality is that we do have limitations and abilities that vary from person-to-person. The reality is that we do have methodologies that categorize us into X, Y, and Z for the sanity of our medical team, care takers, pharmacy companies, etc. For some this may be a personal measurement of what is to come in their future health, or the work that needs to be done to 'get there' - to that point of being 'less disabled.' As people who communicate the reality of having a disability, it is ultimately not wholly surprising when such statements slip out of our mouths. I am willing to assume the best and hope that the majority of the time... these statements are said with good intentions.

As a final thought: In my personal efforts to add what equality I can to the communities that I am a member, I will actively commit to not spreading us farther apart by placing ladders between people. We aren't a community that is going to function successfully if members feel entitled to arbitrarily climb 'above,' or are carelessly placed 'below' someone else. We're in this together, so let's just settle in comfortably with one another as ourselves.       

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

Forget the dictionary definitions, and that goose-bumps moment you get after hearing a motivational speaker, or seeing a moving piece on a local hero on the 10 o'clock news. I want to know what it means for you to be inspired; what does it mean when you cross paths with someone inspirational? Here is what it means for me:
When I am inspired it means that I am encouraged and motivated to try harder. It means that I believe in myself a little bit more than I did a few minutes ago, it means that I have just witnessed an example of someone else trying harder - and the outcome of what that led to. It means that I have just been lucky enough to add another instance of possibility to my archives of possibility examples. So when I flip back into my brain and come across the word 'Inspire, Inspirational' the little card in my mind reads: Please see 'possibility' ... and then like a Google search hundreds of hits on moments, images, individuals, and life experiences pop-up in my mind.

Rarely do I ever write about something that is current in this blog. Usually I'm drawing from old memories, face-cringing injuries, or from the endless pool of awkward life events I have stored up inside this quarter-century body. Today something happened that made me smile so broadly inside that I thought my chest could wrap its flimsy little rib bones around the whole Earth. So I wanted to share it:

Just a side note: I don't like saying the word 'jobs' 'volunteer opportunities' 'internships' or 'the regular ol' 9 to 5.' Instead I'm more apt to use words like 'side gigs,' 'projects,' 'a chance at world conquest' or 'opportunities for mind blows.'

One of my gigs is at a tiny, and I mean so tiny it's currently run by one 22 year old woman, and a grad student - homeless prevention organization. Some of you know that homelessness has long been an intellectual curiosity of mine, and it has since moved far beyond the realm of the classroom to real-life action. At this tiny organization is where I get to experiment with those curiosities. And yes, it is just as dangerously thrilling as it sounds. We work with individuals and families who are either already homeless or on the verge of homelessness, and these days it is the latter that has seen a piercing spike in numbers. Due to the economy and difficult job market, thousands of people are struggling to find a job to pay for the mortgage, make rent, put food on the table etc. The swing of living pay check to pay check offers little to no stability for families caught in this momentum.

All it takes is a sudden sickness or accident and as many of us know - life gets turned upside down. Soon we are not only scrambling to afford the everyday living expenses but also medical bills, transportation to doctor's visits, child care, gas, medication etc. Unfortunately for many those everyday bills are oblivious to our other life circumstances. When rent is due it's due, very few landlords have the compassion or logistical ability to consider a very sick child, or the fact that the head of household has just lost her job. Soon these are the folks who find themselves staring down an eviction notice and homelessness. All of this happens within days, sometimes within hours.
At this tiny organization that began in 2009 we have since prevented homelessness for 300 families, and been able to raise $300,000. How is it done? What makes it possible? Sorry -- that'll have to be for another post. But of the sometimes 5-8 different projects that I've got going on, this remains my proudest mind blow opportunity. I love what I do there. And to be able to say those six words is something I know I am incredibly fortunate to utter.

This tiny organization is mighty. It matters to the community and city we live in. Because people and families believe that they can make a difference, and what a difference it has made! I am lucky to even be a part of it, to be a part of the journey's the families are all braving as they move forward towards their goals. Most of the time those goals are as simple as "we want our daughters to live in a safe neighborhood, to do well in school, to not live in the shelter system, and to be proud of their parents." Think about it, how different are we from each other? Isn't that what every parent wants at the end of the day?

You would think that would be enough to make any person's day bright. And it does make every minute of my day worthwhile, challenging, exhausting, stressful, and driven. It keeps me moving forward. Over the past year that I have been involved with this organization I have become close with the 22 year old woman who makes the entire ensemble happen. K is wise beyond her years, charismatic, warm, sensitive, resourceful, creative.. I could go on.
Sometimes I worry whether or not I am seen as 'capable' in the professional world. Does she really think I'm able to do this? Is she just going along with my crazy ideas because she wants to give me a chance to learn? Does she see me for what I am able to bring to the table everyday? These are questions that spew from my brain because there are often moments when I am uncertain about my own self-confidence; this is particularly true in the work place/professional world where I am only just beginning to find my footing and build a reputation for myself. Am I doing the right thing? What are the assumptions people are making about my abilities? How do I present myself as an independent-thinking professional who uses a wheelchair? ...The questions are endless.

Today we were on our way to lunch. Recently K had injured her ankle in a trampoline dodgeball game (exactly what it sounds like), and was hobbling around the office on crutches. I told her that we should just get lunch delivered but she insisted that we "just go around the corner, there's a restaurant I want to try out." So I shrugged and trusted her judgment of how much hobbling on crutches she really wanted to do and off we went. We got to the restaurant and K went to go look at the menu posted on the window, from the window I could see that there were stairs leading into the restaurant.
In my mind I assumed that K had planned this in advance. (I mean the woman runs a homeless prevention organization for cryin' out loud!) I assumed that there was a wheelchair accessible entrance somewhere around the back, or that there was an elevator in the lobby that I just hadn't seen yet.

"Okay let's go in!" She hobbled ahead and we stood at the entrance staring up at the flight of stairs. That was when I realized that it was happening again, and my heart began to creep into a slow smile.
"Umm is there a wheelchair entrance somewhere?" I asked.
K turned to look at me, eyes wide in total shock and perhaps slight embarrassment --
"Oh Yeah... I hadn't even thought of that!"

All those thousands of questions about my self-confidence in the professional world evaporated the second she admitted her oversight. When will I learn that people see me for what I offer and not for the wheelchair? Or maybe I should learn how to be selective in who I include in my life, or learn how to collect those individuals to my real-time on-going life stream of adventures. Something tells me that I probably can't learn how to do this in a book. I'll just continue doing what I've always done: give it my all in everything I involve myself in and let the rest settle itself. 

As a young child it was easy to get people's attention. Until about age 11 I remained the size of a small stuffed animal, and have been told that I was irresistibly adorable. Many adults were curious about the fragile seven year old who could converse with fourth grade vocabulary, but appeared to be the size of a two year old, and scurried across floors with the confidence and speed of a fourteen month old baby. Growing up I remember there was usually someone rapt with attention as my parents patiently explained my curious stature and why "the whites of her eyes are so blue." Among adults I had become used to being in the spotlight, accustomed to being listened to because of what I looked like and what I had.

Fast forward fifteen year later and that seven year old is not much taller and could easily be mistaken as a 12 or 14 year old teen. Except that at this point I had just finished school, had a college degree and was about to start my first "real adult job." It was an AmeriCorps position where I was doing a year of service at a community college in Boston. A real adult job that had real adult responsibilities; I had my own office, extension, email - the whole nine yards at a place where looking cute would no longer matter to anyone.

My job was to put together a mentoring program that served first-generation community college students. Most of the students were older than myself, some had had years of life experience, some were veterans who were not much older than myself, many were parents and they were all at various places in their lives but knew that they wanted some guidance to help steer them in a direction toward success. Suddenly the spotlight I was in was not so much because of what I looked like, but more because of what I was asked to do. At least I knew that much was true; however, I found out quickly enough that it would  take awhile for this truth to sink into the community that I was serving.
Who is this young person that is suddenly trying to put together a mentoring program for us? And what does she know about how things work here? She's so small and soft-spoken our students aren't even going to listen to her. These were some of the question I was up against and the attitudes that were pervasive for the first half of my year of service.
I quickly realized that things were different now than they were for me when I was a kid. I needed people to pay attention because of what I had to offer. I wanted the attention away from myself, and instead on the need that I was confident that I could meet. I would need to take on more of an authority figure than I was used to, and somehow fish out of thin air at least 24 more inches to add to my height. Needless to say I was well aware that I had my work cut-out for me.

After months of research, interviewing, and performing assessments on students and staff members to figure out what kind of mentoring program would be needed, it was time for me to present the findings. I would be presenting to the school's Board of Trustees, the President of the college, other members of the Cabinet, and various faculty members. Going into the presentation I told myself this is it. I thought to myself this is my chance to own up to the work that I've done because in this presentation nothing else matters, nothing else should matter but what's best for the students at the college.
That day I was still 3ft tall, as tall as I had been since age 11 and as tall as I will ever be. I still had a pip-squeakish soft-spoken voice, I was still in my first "real adult job," and was still the youngest employee at the school. Not much had changed except that by putting the needs of an entire population of students before myself, I grew to be taller than everyone else in that room. It was me who had the upper hand in that moment, I was the one who was offering a real solution, and while it was nerve-wracking for me to defend my findings to the Board of Trustees - when I responded I realized that I am the one who is speaking with the most authority and knowledge on this topic.
Since then whenever I am confronted by another moment where I might be physically 'dwarfed' by others, I look to what's at stake --

Authority in a Small Package:

• It's not about you. People look to leaders who are comfortable with themselves and are confident in varying situations. I have learned that if I make it about how nervous I am or how diminutive I feel, then that's all folks will see. But if I make it about what I can offer and what I know, I can easily switch the focus away from my more vulnerable aspects. 
• Authority is only gained with respect. And as we all know, gaining respect takes time. For authority to work you need an audience that will listen, and people will only listen if they respect you. Build respect and trust, thankfully these aren't things that require any great height or physical strength to acquire.
• If you doubt yourself then others will follow suit. When we think about why we don't think we're capable, is it because of what we're telling ourselves? Or is it because what others are telling us? When we tell ourselves that we can't give the speech then it's not going to matter how others perceive us because already we've talked ourselves out. But when we tell ourselves we can give that speech, the way others perceive us can become fodder for us to prove wrong. And who doesn't like a good ol' "Hah! I WAS right and YOU were WRONG!" 
• Eye-contact. This is one of those tricks that I have had to practice a lot. Just because I am short doesn't mean that I need to physically look-up or look-down at anyone. By matching someone's eye-contact we are already beginning to present ourselves to be capable of playing on the same playing-field. It also conveys a sense of seriousness and an air of 'adulthood,' when we are naturally able to do this. 

Having a rare condition means that being noticed is just a part of the package. If I were a product on a store shelf I would have a WARNING label and it would probably read something like this:

Standing at roughly 3 ft, cruising around in a power wheelchair, bowed arms and with other key features of O.I. it's pretty obvious that I have a disability. Despite all of those visible clues I still find myself trying to hide my disability. My futile attempts occur less frequently as I have gotten older and as I have become more comfortable with myself; when I was younger though, I went through all kinds of ridiculous extremes. Whether it was out of embarrassment, shame, awkwardness, or just a strong desire to fit in - hiding my disability came about in various phases and stages. At first it was hiding physical differences, then it was about hiding my limitations, and as I got older it was all about over compensating for my handicap - pushing my other abilities to draw attention away from the O.I.
As a kid I went through a phase where I spent months getting around in my tricycle only. I rode it around the house, around the neighborhood, even begged my parents if I could take it to school (they drew the line there - but I think I took it to show and tell one time..). Realizing that I couldn't walk without the assistance of leg braces and a walker -- contraptions that no other kid I knew needed, I loved the tricycle because not only was I able to get around without anyone else's help, but other kids used bikes too! In my eyes I could look 'normal' for once!
This was looong before I got my power wheelchair. My physical therapist was still working with me to teach me how to put my leg braces on, how to safely climb in and out of my wheelchair, and gaining the muscular endurance to push myself for longer distances. I wasn't interested in any of that though. I just wanted to pedal away to my heart's content.

Beginning around the third grade through high school - I never wore shorts or skirts to school. During these years was when it looked like I had two knees on each leg. My tibia was incredibly bowed and after one particularly annoying day of kids whispering and pointing at my shin - I refused to show my legs ever again. It didn't matter how hot it was, whether or not the school's air conditioning was working, or if we had gym class - I was adamant about never wearing shorts again. In fact these were the days when I would force the shin guard of my leg brace over the almost 90 degree curve of my tibia; it was common for me to come home with bruises on my tibia from where I had tried to flatten the bone down with the plastic piece from my leg braces. By the time I was in high school I had already had several rod operations and though it no longer looked like I had two knees, the surgical scars on my legs bothered me. The scar tissue ran the length of my shin, from my knee to my ankle and being a fairly private person about my body and the way it looked, I wasn't interested in entertaining the curiosities of my classmates and friends. I didn't think I knew what to say, how to say it, or knew how much information to give. Besides at this age everyone's mentality is to fit in, to not be ostracized, to not show weakness or at least... if you could help it hide your vulnerabilities and oddities.

High school was also the time when I took off with my passion for writing. My English teachers took special interest in my ability to write - be it poem, newspaper article, short story or just a plain old essay. With the guidance and encouragement of a few teachers in high school I found something about myself that was not only hidden, but something (unlike my disability) that I had full control over. I chose which words to use, how I wanted phrases to flow, what images I wanted to conjure in my readers mind, what problems I wanted characters to face, and how everything would be resolved. Immediately (and this is still true today) I recognized the ease at which I am able to express myself through writing - on paper there is no judgment or questioning stares from strangers or my peers. On paper everyone starts with the same blank page, the same capital letter, and ends with the same period. To this day I am painfully cognizant of how I am able to connect with people on paper in a way I haven't found out how to do in person... but I think I'm getting there. So it was, that during high school, I began to 'learn' how to hide my disability behind the things that I am capable of. I taught myself how to draw attention away from what was obvious and became known for the girl who wanted to be a writer instead of "the small girl in the wheelchair." It wasn't long after that I became involved in the student newspaper and the literary magazine, with some persistence and work I changed the way my peers and the student-body came to see me.
I think that every person with a disability goes through something like this. At least I hope everyone does. For me it was a time to discover what I am capable of, what I enjoy doing, and learned more about myself that went beyond the day-to-day challenges I faced. So much of the time the disability might consume our lives that we forget there is a person underneath all of the medical care. And so when the day comes that we finally find something that we can do well, that is safe for us, something that WE CHOOSE to do and to be, and is something of a 'gift' - it almost seems to propel us to some other high that we will cling to and throw at others who don't know us very well, as if to say "here. This is the real me. Not the person you see before your eyes. This is who I choose to be and who I want you to know instead." This self-discovery was like a catharsis 18 years in the making, a relief to know that I had an option about who I wanted to be and what I could be capable of.


On Hiding Myself:

• I think that because I was the only OI'er in my family, and the only OI'er I knew in my life growing up - my attempts at hiding my disability were inevitable. 'Hiding' my disability was my survival technique so to speak, it was how I was adapting to the world and everyone around me
• It wasn't until recently that I came to realize why I did the things I was doing as a kid/teenager. It is one thing to realize your behavior and something else to change it, the latter is what I am slowly working on these days
• Aside from me, my parents have two other children - my two brothers who are unaffected by O.I. My parents didn't cut me any slack because I have O.I. or because I was in a wheelchair; I had the same expectations as my brothers and that was to first and foremost do well in school. With that in mind I don't think my parents realized what I was doing by 'hiding' behind what I discovered I was capable of - instead they just encouraged my skills and strengths!
• I don't regret the way my parents raised me in this way, I've certainly come quite far in what I have accomplished and am proud of all of it. I'm glad that they pushed me and didn't allow my disability to be an excuse and so many times my only options were "yes you can do it" and "you must do it well"
• A part of this entire process, I think, is becoming more comfortable with yourself. Not just what you see in the mirror but the implications of what having O.I. or any disability means. I'm beginning to learn that this 'meaning' won't be set in stone for as long as the status of your disability / O.I. changes and impacts who you are as a person over time. Being okay with this fluctuating and changing status is definitely key     

A Small Note for the Big Adults: Knowing that my intended audience were elementary school aged children put a lot of pressure on me for this entry! After a lot of restless thinking I thought back to the authors I found comfort in around that age (Roald Dahl, Dr. Seuss, and Shel Silverstein) and decided a silly poem would be perfect. I hope this poem helps parents & kids discuss concerns they have with the first day of school, but in the end know that it's no way to live life to be constantly fretting. So please, if you could share this with the young O.I'er child in your life that would be wonderful, thank you!!
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In every Fracture Free Friday post I will answer one question that is submitted by a reader. Please note that these questions do not have to be OI-related and can cover any topic that you'd like to 'hear' me babble about. Send your questions into oi.perfect@yahoo.com   
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Fracture Free Friday Q: Osteogenesis Imperfecta is under the umbrella of "dwarfism". Do you consider yourself a Little Person and how do those with OI view themselves in the LP community? 


A: I thought this was an interesting question because I had never thought about it before, but before I begin my response I must note that I'll only be responding from my own perspective!
Although I do consider myself to be a little person, I consider myself having OI first and the short stature is a symptom of the brittle bones disease. I must admit that I'm not very knowledgeable of the LP community and have only really "begun" to get involved in the OI community (with the start of this blog). Even though being a little person affects my daily life more than having OI does in my mind I affiliate more with OI than dwarfism. It's weird because I probably struggle more with being much shorter than needing to be extremely careful (at this point in my life), when I was younger this was the opposite; it was easier being short as a child, but because I was still learning what my body could and could not do I had to be more cautious. 
As I was thinking up a response to this question over the past couple of days I tried to liken it to being hard-of-hearing. On forms that request listing my physical disabilities I rarely remember to put down the fact that I am hard-of-hearing. I think that similarly to being short statured, I view both as symptoms of the OI but not the main lens from which I am looking through most of the time. Maybe it's because so much of the focus in how I have managed my life has been centered around learning how to be cautious, and managing a fragile existence? Maybe it's because I associate most of my pains and hurt (the fractures) as the more 'disabled' aspects of myself? I'm not really sure, to be honest. 
I can understand that telling strangers off the street that you are a "little person" instead of going into the whole "osteogenesis imperfecta, a brittle bones condition.." shpiel, but I do think that if I had to go with a label I would prefer to tell people that I have brittle bones. I think it's something that better represents my physical limits and capabilities, and also lets others know that they need to be careful - which I think is the most important thing. 


So readers, I am curious to know! Do you consider yourself to be a Little Person? And how do you see yourself in the LP community? Leave your responses in the comments section please!

In yesterday's post I talk about the difficulty with meshing activities/behavior with my actual age. Because I have such a short stature I have a tendency to get treated like a child or have childish expectations of me. Today's post is going to be the opposite issue. I'm not sure if it is just me or if other OI children feel the same way, but up until I hit my 20's I always felt decades older than I actually am.

Is it because I was constantly surrounded by adults as a very young child? Or because I had to learn many life lessons the difficult/painful way before I learned to ride a bike? Was it the different priorities that I seemed to have been born with? (That although life is fragile and scary you need to be bold with it!) Those hours spent at hospitals in the waiting room with a broken limb - so much goes on inside my head during those minutes. I remember feeling isolated, in pain, and yet needing to be patient, to be strong, to be brave - not just for myself but for my parents and other family members. Surely all of those thoughts slamming into one another like a domino effect at the age of 3, 5, 9, 15, and 23 must have had some impact on my mentality and thought process? To be honest I don't think my ability to think is any different than someone else my age, I'm sure of it!

In the moments before my orthopedic doctor pulls the x-ray up I am learning about fate and consequences. Those seconds I am realizing that it is a terrible fracture an innate coping mechanism kicks into gear. When strangers unintentionally shove their butts into my face I am learning how to find humor in everything. The skills of patience and rehab are honed every time I am done scratching the heck out of a freshly freed limb from a cast. Being the only one in my family with this mysterious fragility has taught me how to be alone and forgiving.
None of those situations come with some kind of magical manual that my orthopedic doctor handed to me when I was born; it wasn't like he said "Now when you grow up and turn 21 and need help with managing fractures turn to page 57 in this handbook." There have been countless times when I have wished for such a guide but of course no such thing exists. I have just learned how to deal with things as they come, this natural reaction to situations has become so fluid that I don't even think about things anymore. All of this is just all that I have ever known and it's life as I have come to love and live it!
But just because I might have been able to think like a 42 year-old at the age of 17 doesn't mean I had all the answers to everything (even though every 17 year-old believes she does). It seemed like I was so well versed and calm about bigger picture instances in life but when it came to the smaller stuff I tripped and stumbled just as much as the next kid. How do you ask a guy to prom? How will I be able to drive a car? How do I open my own bank account?

Never mind 17, even today I still struggle with a lot of things that I thought I should have "figured it out by now." How is it that I can calmly navigate my parents through a major rodding surgery and not explain to them that I don't want to live at home? How is it that though I have lived for years away in a dorm that my family still worries every time I am out past 9pm? And even though no one else in my family has O.I. - how come they don't understand the stuff about me that is non-OI related? The gap in understanding and maturity that I am constantly traversing can be infuriating, exhausting, and disappointing. But it's something I can remember needing to understand ever since I began kindergarten (I think it's just as important as learning how to manage fractures!); I'm not sure if there is a name for this kind of thing that I have been describing, but what I do know is that it's definitely a trait of having O.I. and one of the 'symptoms' I will happily deal with long after they find a cure to my fragile skeleton.

The Other Balance:

• Even though you've been through some life experiences that few others have, you're not supposed to have the rest of your life figured out (learn this sooner rather than later!)
• OI isn't just a condition that impacts your genetics or your bone structure, it's life encompassing and isn't always something that makes you fragile - you will be surprised at how invincible it can make you in other ways
• I have yet to learn how to do this and it's still a hugely difficult challenge for me today: understanding how to mesh the OI affected parts of your life with who you are as a person is key to this 'balance'
• Although people might assume that you have a better understanding of certain 'life things' - no one expects you to act any other way than who you are as a person
• Like I said, I have no idea what this 'mentality' that I have described above is called, but when it gets exhausting for you talk to your friends about it. Even if they don't have OI, friends are there to listen and to help - I have been surprised at the empathic abilities of my closest buddies