Showing posts with label disability attitude. Show all posts

I'll Decide For Myself, Thanks

Sometimes when we are fed messages over and over again we start to believe them. Our eardrums pick-up on the same sound bytes and begin mindlessly thumping to the beat of the outside noise. Words fall out of our lips that form around them, before our tongues can swallow the letters back. Eyes begin to glaze over to the signs that are most familiar to us, the ones that don't make us squint too much from the glare or the darkness. Put all of those actions together and the ensemble can be dangerous. Dangerous because it's easy to settle, to just give in to those most basic human senses and believe.

For quite sometime this is what I did. I became used to the messaging that shaped my life by my family, and the society that I live in. "You can't.." "You're disabled.." "You're handicapped.." "You're a dependent.." "You're on government aid.." "You're smart but.." "People will always help you.." "It's okay no one expects.." "No one is going to because you're.." "You're qualified for services.." "You're not qualified for services.." "Just work the system.."
These were just some of the things I heard, I spoke (more like I just mimicked), I saw the process and the experience. Of course not all of these things are negative! I would like to think that I've had a fairly positive experience of my role in my community, and in society at large - at least it's something that I can say I am proud of having today!

But I do think that when we have a disability others are quick to flock around us, like a feeding frenzy of pigeons at a park, to pick and squawk their two cents in. Everyone has a different idea of what we need, of what we'll be capable of, of where we should go in life, of the best course of action, of who will provide the best care - it's no wonder why some young people (or older?) may feel consumed by their disability! It's frustrating and can easily spiral into a disheartening feeling, that you have a thousand papers (of all the same information to fill out), and you need to call hundreds of (government automated voice) representatives just to say: yes I am disabled, yes this is what I need and I know damn well you can provide this. Is it just me or does that sound incredibly needy?

This is why I have begun, recently, to flip the equation. When I call I introduce myself as "Sandy..and I work at...and I need help with this..and could you tell me my options.." As opposed to "Hi I use a wheelchair and.." It might be a small change in the conversation, just a small flipping of the words - but I have noticed a readily positive change in reaction just from the way I present myself. The truth is just like us, other people have the same senses we do - they too are getting fed certain messages over and over again. We can't change how their senses process those messages, but
we can change what they are being fed.
Sure, maybe after reading this post you will try this out for yourself (and if you do - let me know how it goes!) but I don't want to just sit here and tell you this is what has worked for me, and therefore you should do it. I am not your mother, your teacher, or pfff anyone in any kind of authority. This is not a game of Simon Says for you!  

I'm just another young person experimenting with the way I interact with the outside world, trying to reach for those scattered breadcrumbs around me - and deciding for myself who to toss them to. Consider this an invitation to join me.   

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A Response to: "Can You Walk Even a Little?"

I'm just going to go ahead and make the assumption that you, dear-questioner-of-my-walking-abilities, has no concept of what "little" actually means. I'm so glad you asked because I'm more than happy to explain!

Little isn't something that can really be measured in inches or feet, so much as it is lived in years as someone who is a mostly-functioning 3ft tall adult. Little isn't something that can be sized up in your weird corner-eye glance, it's something that needs careful scrutiny on an x-ray for that tiniest sliver of a fracture. Because that tiniest sliver can actually be causing a very big pain. Little isn't something you can purchase and wear when you buy clothes from Gap Kids as a college student, it's just a paradigm and a frame of mind that we decide to put on ourselves. And just trust me on this one - this frame of mind isn't really a one-size-fits-all garment. Actually, you need to be a very big person to understand what "little" really means. It's kind of like how you need to experience sadness to understand what happiness is all about. Get it?

The first time I walked I was around four years-old and had already read my first beginner's chapter book: Amelia Bedelia! As I stood between the metal railings, feet planted in "proper walking position," legs strapped into my braces, and my physical therapists' hands on my waist - I had no concept of what "walking a little bit" meant. I understood walking, I understood standing, I understood that mom and dad were - needlessly - nervously standing by, because as I understood it: walking is something everyone does and this is not a big deal. So I walked: one foot in front of the other, the way I had seen my older brother and my parents, and my friends at school walk. I copied what was around me because that is how children first learn. As far as I had observed at that point, no one around me was concerned about walking "even a little." They just did it.

That first time I walked a few steps and then a few more, all the way to the end of the railing when I fumbled a bit to turn around. Did my upper body turn and cross over first? Was I supposed to reach one hand over to the other side of the railing? Or did my feet turn sideways first? Actually - back up. Wait a minute. Before all of those questions of "how do I turn around? And what do I do now?" came careening into my brain, I thought "Wow cool! I just walked!" My palms were sweaty, I probably looked a little robotic in my uncertain positioning, and even though I couldn't see my physical therapist behind me - I knew that she was beaming. After that first session was over she probably wrote in her physical therapist patient chart: patient walked with the assistance of bars and long leg braces. Distance covered: 5 ft. 

I'm pretty confident that she didn't check off on her charts:
X  Patient Walked A Little.        Patient Walked A Lot.
But I'm not a physical therapist so what do I know?

So as you're standing there in the aisle of the airplane or bus, or if you're standing in front of an amusement park ride, or maybe you're on the deck of a swimming pool, or you're standing at the foot of my hospital bed, or you're on the dock in front of a boat - and you ask "Can you walk even a little?" Please don't be offended when I look back at you baffled. I just don't understand your question. I mean, I get what you're asking - but I don't actually * get * it. Maybe it's because you are uncertain of how to transfer me, which is fair and I would be happy to help guide you. Maybe it's because you don't want to assume that I can't walk at all because for many people translates into I can't do anything at all. Or maybe you are uncertain of how much help you should offer, and don't want to come off as intruding on my stubborn independence. Thank you, I appreciate it.

(Don't even get me started on how it must feel for those of my friends who can't walk even a little! This is one of those rare moments in the world when something "even just a little" is not taken as an easy feat, it's not taken as anything even close to 'cute,' it's probably not even taken as anything little at all! For someone who can't walk, your 'little' question may be an unwarranted reminder of a BIG 'failing.' Your question may have just driven a big awkward spear into where you meant to inflate a raft). 

But for someone who has never put her steps forward (or backwards) in life in terms of little - I hope you understand why your question comes off as slightly jarring and a little awkward. Does it make a difference to you whether or not I can walk a little after having rod surgery? Or a lot after breaking my femur? Are you going to record the "little-ness" or "big-ness" of my walking ability in a patient chart I don't know exists? Why should we put a 'size' on our steps at all? Why can't we just accept it without the vague restrictions and fuzzy borders?

Those are my questions to you and when you've answered me all of those, then you can answer for me this question: "Can YOU walk even a little?" And let me know how it feels.

If you think your friends/families/other networks might appreciate this, feel free to share this with them! ALL of the content and posts on this blog are always open for sharing -- the more the merrier :-)

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Confessions of My Own Guilt

In previous entries I have written about the guilt my mom may have grappled with, and I have also written about the guilt my friends may have had in the face of accidents.

But what about my own? Do I have any guilt that the O.I. has inadvertently brought on? Yes, plenty. Do I know how to deal with all of them? No absolutely not.

I feel guilty when my friends can't go places they really secretly want to go because it's not accessible for me. I feel guilty that someday my brothers might have a child with O.I. I feel guilty when family vacations are limited to what Sandy can or can't do. I feel guilty when I interrupt a crowded restaurant of diners who need to stand-up and pull in chairs so I can get past. I feel guilty when parents come up tell me "my child is severely disabled and is not nearly as capable as you are.." I feel guilty when I hear about babies with O.I. who are taken away from parents who are accused of child abuse. I feel guilty when I hear about how much my mother cried in my earliest days. The list could go on forever, each statement more absurd than the next.

Many of you are probably thinking, but Sandy none of this is really your fault or anything that you can control! I know, I know. Believe me I've told myself hundreds of thousands of times that friends are supportive. Family will always love you. Strangers are not blaming you. And you had no choice in this odd chain of events, it is what it is.
Yet that feeling exists. It's difficult to explain what it feels like but I will try: It is in the slow wave of red that washes over my face as I get embarrassed, it is in the uncertain eye-twitching awkward glance around the room, it's when I look down at the floor and mumble a useless "I'm sorry", it's tangled in that lump in my throat that I try to shrug away, sometimes it's in the complete blank stare that I give - eyes wide and filled with all the things that I could say but shouldn't need to. The feeling can be microscopic and a mere speck of dust on the tip of an eyelash, or it can be an enormous shadow that flicks across my face like clouds pacing in front of the moon. 

So how do I deal with it? Well that's an unfinished answer because I haven't really figured out how to exactly. Part of it is that I am getting better at my own self-confidence, and realizing my own self-worth. The notion that I am valued and not a free-loading burden presents itself to me in various ways every day. These are the moments when I wish my heart and my head were not such polar opposites; because the fact of the matter is at the end of the day no human being should feel guilty for being. Sometimes those moments of realization happen to snag on the fishhook of my attention, and then it wiggles desperately in front of my face until I think okay already, I get it - I have something else to be proud about! Other times these moments slip between my fingers no matter how many times they fall into the palms of my hands. But like a child splashing in the first real summer rainstorm I am out there, palms open and upward - grinning eagerly for that next opportunity to catch a drop of something sweet and joyous. All it takes is one drop for your entire hand to feel wet.  

In an odd way I am grateful that I am able to feel guilty at times. It means that a.) my friends & family are honest with me b.) that I am able to be honest with myself c.) that I am not living a life of false pretenses. This is the other way I attempt to deal with this sense of guilt that creeps up on me: I recognize that it is there. Sure it's never comfortable and it's never something that I look forward to doing, but every time it pops up I have been able to come away from the incident with more of myself intact than buried.

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Wrap-Up

Barrier Breaking Tip: With enough practice (and mistakes) you can turn any action into a habit.



Also, did you hear yet? Perfectly Imperfecta is on Pinterest! Join me here.

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Re-Defining Disability

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 

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Playing the Violin - A Time my Body Didn't Cooperate

When he wasn't looking or was too busy folding airplanes to later zing at my face, I would pluck at his Suzuki violin. In my hands it was the size of a guitar on me, but still I would pluck until he screamed at me to put it down for fear that I would break the rental. Both of my brothers play the violin, and while my younger brother is far superior at it - I grew up watching my older brother pull the horse hairs over the strings.


"Mom, I want to play the violin!" 
"It's too big for you." 
"Can't we find a small one??" I had just begun piano lessons, and it seemed that the 'new-toy effect' had gotten to me. New-toy effect is something I made up, but it's basically when a child gets a new shiny gadget and quickly tires of it after a few days and is on to the next new-toy... the cycle, as many parents probably know, just goes on and on and on... 

My pleading to find "a small one.." that would fit the length of my tiny arms, and also be thin enough to fit snug beneath my chin and neck was an adventure. We went to the local string instrument store and I sat in a room filled from floor to ceiling with violins. I remember my eyes grew wide with silence as I sat in awe of all those instruments. To this day I'm not sure what my fascination with the violin is. Maybe it's because I wanted to do whatever my older brother was doing, or maybe it's because of the magic that could be heard just from putting your fingers down on the fingerboard, or maybe it was because of how soft and fragile the horse hairs on the bow are. Whatever it was, I couldn't wait to get my hands on my own violin and begin to wow my family with the music. 
The woman came out with several different sizes of violins. She taught me the proper way to hold it, asking my parents whether I was left or right handed. 
"Her arms are small because she has brittle bones.." My dad began to explain to her. The woman was confused when she tried to extend my left hand and it abruptly stopped straightening just inches before the right-angle point. 
"So is this all that she can straighten it to?" I looked up at my dad expectantly. I saw the row of smaller violins by her side - lined up like the Russian nesting dolls - one seemingly able to fit inside the other. I was certain that one of them would be able to fit in the crook of my arm and chin!
"Hmm.. well, this is going to be a challenge." She mumbled to herself. With my other hand she placed a bow in it and gently moved my shoulder back and forth the way I had seen my brother do countless number of times. But for some reason it just didn't look quite right with me, I began to get nervous - not understanding what it was that I was doing wrong. After repeated trials and various sizes of violins, and no matter how high I pointed my chin up - there ended up not being a violin that would fit in all the misaligned angles, lengths, and nooks of my bowed arms. If we could find one that would fit underneath my chin, it turned out to be too long - and if it fit the length of my arms then my neck wasn't long enough. 

This memory is somewhat blurry and I'm not sure how it ended. I imagine that it was probably pretty awkward for everyone involved, maybe even a bit disheartening for my parents but probably incredibly disappointing for the four year-old me. Those were the days when I was constantly being told that I couldn't play rough, wasn't able to play sports, couldn't be as physically active as my friends or brother, couldn't run around gym class whipping dodge balls. And I thought, at the time, I had found the ONE activity that was safe and okay for me to do.  But in the end I had gone home that day without a black violin case; my parents encouraged me to continue playing the piano - trying their best to explain to me why I wouldn't be able to play the violin.

In this moment, though I was unable to explain it at the time, I think that the misunderstanding lay in where I was confused. I wasn't confused as to why I couldn't play the violin - that was pretty clear to me from the experience I had just gone through. I didn't understand why my body wouldn't do what I wanted it to do. That was the first time when I realized that my body has limitations. I wanted to play the violin but my body wouldn't allow for it and I didn't understand. When I wanted to sleep, my body did what I wanted. When I wanted to heal, my body did just that. When I wanted to eat, I was able to chew. When I wanted to crawl around, I could do that. But when I wanted to play the violin and do what my older brother did, I couldn't! At that age I could see the difference between playing soccer and playing the violin - this however, only added to my confusion. There was no running, no pushing or shoving, and no dangerous physical action involved with playing the violin. Why won't it let me do it?! 
At that age I was easily distracted and did, as my parents suggested, continue playing the piano. I came to believe that everyone has their own talent and mine was the piano, and my brothers were the ones who played the violin. It probably wasn't until I was a bit older that I was able to accept the limitations that O.I. puts on me. This is certainly no easy lesson for any one to swallow, never mind experience first hand but it is a concept that requires time to fully unfold. 

All I can offer is this for a take away thought: for every time my body doesn't cooperate, I am able to find another way to adapt or accept my limitations. And though I am not always able to do the things I initially wanted, I have learned that finding alternatives is a means of survival. It's a means of being the champion underdog. It's a lesson in patience and learning to discover opportunities greater than yourself.  


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The 5 Perks of Being in a Wheelchair

1. Awesome concert seating accommodations. Whenever I go to concerts or sporting events I have always been appropriately accommodated. This usually means getting seats that enable me to view the stage / field, but also maintains my safety. Sometimes there is a roped off section for wheelchair seating (plus one or two guests), other times accessible seating is intermingled with the rest of the concert goers. Either way though, I have never complained about this and ... neither have my friends =) It's particularly sneaky when I (purposely) buy tickets that are NOT accessible beforehand.. and on the day of the event, places will have no choice but to put me in accessible seating! This way I'll just wind up paying the difference of the costs ;-)

2. Courteous and chivalrous behavior. Although there will be some obnoxiously rude moments, for the most part I can expect people will treat me courteously. Who said chivalry was dead? Chairs are always pulled out for me, doors are always held open, and usually I am allowed to enter the elevator or other places first. Also, I personally think it rude when guys check out a woman's ass. Glad that I'm usually sitting down to avoid that kind of staring.

3. No one questions what I'm doing. I might be climbing on top of my wheelchair. I might be driving in the middle of the street in the middle of winter. I might need someone to carry my tray for me while I just point at everything I want to eat. I might be setting off the alarm to an accessible exit / door. Or I might be taking longer than necessary in the accessible bathroom. But rare is the moment when I am questioned about my actions. If any non-wheelchair user were asked why they got to cut the line to the dressing room (to get to the accessible dressing room)... they might get glared at. Me? No one questions me. The wheelchair silently answers all of their questions.

4. I can stop traffic. Growing up in the Northeast (in a city that's known for its crude driving behavior), I have learned that being able to stop traffic is a power I should wield more frequently. In the winters the sidewalks are usually poorly shoveled and there have often been times when I just drive my chair in the middle of the street instead. Even in Boston, a driver that honks at a wheelchair trying to survive the harsh winter would be deemed "Epic Masshole." Other situations: when construction is blocking the ONE curb cut to a sidewalk, I have had police officers stop traffic and construction for me to cross safely. At first I thought it was a bit awkward and silly, but now I think it's just amazing.

5. They don't ask me for money. You know them. Those, usually, 20-somethings who are standing outside in every form of weather wearing THOSE t-shirts, holding those clipboards... ready to accept your Master Card, Visa or American Express for a donation to save the whales. Usually when I'm cruising the city my wheelchair is lower to the ground, this makes me able to go faster - way too fast for them to ask me "do you care about?" It's not that I don't care, it's just that I don't want to be bothered filing out 500 lines of personal identification, and then tugging out a credit card in the vain hopes that maybe my $20/month donation may drastically save a baby otter RIGHT NOW!

What's on your list of perks?? 

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Disability & the Un-wanted "Fame"

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:


WARNING: Will draw unwanted attention and may break from little to no apparent reason. Read safety manual before operating; DO NOT leave unattended with children 10 years and under. 
Store Policy: No returns, refunds, or exchanges after purchasing. All sales are final!

But since I am not a product on a store shelf and I'm an actual live breathing human being -- I instead have an invisible sign that says:

Currently accepting applications from the shadiest characters of society to offer me their 2 cents. Must submit applications by interrupting my morning routine, while I am eating lunch, or while I am otherwise minding my own business. Sanity and logic are not required for this conversation.


Seriously. I am sure some of you must know what I am talking about right?! I can't be the only O.I.'er out there who gets told all kinds of special comments from fellow-earthlings that roam this planet! 
"God bless you dear!" (My reaction to this has been "but I didn't sneeze!")
"Jesus will save you." (I wasn't aware I needed saving. What's going on? Is there a fire?)
"You are just so amazing." (Said to me out-of-the-blue by Random Stranger).
"I don't know how you do what you do." (I breathe the same air you do, buddy). 

There is a sense of anonymity that I have never known. In school I remember complaining to my friends that if they skipped a lecture it would be unnoticeable, but if I were to skip a class the professor would immediately notice -- and in fact they did! Where's the girl in the wheelchair? I have also been introduced like this before, Have you met Sandy? She's that girl in the wheelchair. The small one, I'm sure you've seen her zipping around campus. 
What's worse is when my lack of anonymity is flipped and I am expected to know EVERYONE ELSE in the world. "OMG YOU DON'T REMEMBER ME?! BUT I REMEMBER YOU!" Well obviously you remember me, I am (my wheelchair is) kind of ... uhh.. difficult to forget and misplace. I used to feel bad when I failed to recognize someone when they so clearly remember me, now I have learned to play it off on my general social-awkwardness to begin with.   

If I go to any store, restaurant, movie theater, or any other establishment more than twice I begin to get recognized by the people working there. I'll see it in their stares, oh she's here again. I am going to go talk to her and make her feel as awkward as possible. From what social interactions I have observed, it is my understanding that when two strangers make small-talk with one another it is usually because they have something in common. But with me this never seems to be the case. Or at least I don't plunge far enough into the awkward-conversation, not far enough to find out what I could possibly have in common with this person who is looking at me like they just found a lost puppy they would love to adopt. 
Also, it is never exactly small-talk that I am having with this stranger. I am not one for small-talk and in fact I despise it, but I'm pretty sure no small-talk involves some blunt observation of another person. How come my friends never have small-talk that goes like this:
"Wow you're short!"
"Yep."
"So how tall are you?"
"Exactly a yard."
"That's so cool! Have a nice day!" 
"Umm yeah." 

Or 80% of the time it is not about me but my chair:
"Hey, nice chair!"
"Thanks."
"How much does it cost?"
"A couple thousand dollars I think."
"Can I ride on the back?"
"Umm.. no..I .. don't really know you.." 


Sometimes I wonder what it's like to be able to go through an entire day without a stranger trying to talk to me. What is it like to not be recognized by people you don't even know? What is it like to not have your existence acknowledged by random beings? How does it feel to go from place to place without any history of you being there before? Does it make you feel worse to go into a doctor's office and not be greeted with warm and knowing smiles by everyone in the building? Depending on the day and my mood my answer varies, but in general I've come to get used to it. I take all the awkwardness and strange behavior in stride and tell myself that this is all a part of the package... I mean really what else is there to do?? Because in case you hadn't noticed yet: this package does NOT come with an instruction manual. 

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Stable Disability, but an Evolving Self (Part 2)

Warning: If you see us together, The PARTY has arrived ;-)

One of the biggest positive influences to my self-worth during college was the distance I had from my family. As harsh as that may sound it was great for me to make all of those day-to-day decisions on my own: figure out when I needed to rest, how much could I handle (alcohol, school work, all-nighters etc), what accommodations would I need, the best way to get around the snow, and how I was to advocate for myself. The biggest change in this sense was that I felt productive and purposeful within my own life; by taking charge of these details I had finally got to a point where I was literally taking charge of my O.I. and O.I. was no longer the perspective through which I saw the world. My self-worth was no longer defined by the differences I saw between me and my peers, and it was no longer bogged down by the things I could NOT do. Because now I was in college -- and college was a place of learning, of being involved in the student community, of leadership, of having a positive impact in the community, and the overall growth of a person. The focus was no longer what I was unable to do, but what I can do and how I can do it best.

In some ways this was good and bad. It wouldn’t be much later till I realized that by throwing myself head first into being engaged in the student organizations and my life as a young adult – I had effectively boxed everything about O.I. into a crate and locked it away in my head for four years. Aside from some minor accessibility issues and a two or three broken bones throughout my entire four years, O.I. stayed hidden, muted, and I crammed every aspect of it in some dark corner of my brain. I was focused on the school paper, then it was Students for Social Justice, then the women’s center, then my semester away in Washington D.C., then my internships… I was a research assistant to one of Obama’s foreign policy advisor’s, then worked on a national campaign for volunteer service, had a role in policy changes, and learned about how warfare was striving to be more cautious of protecting human rights. In my student club I was teaching other students about human trafficking, the importance of human rights, attending U.N. Days, getting involved in Amnesty International, raising awareness of homelessness and poverty issues, and inviting guest speakers to campus…
Through all of that I honestly didn’t feel like I had time to “be disabled.” I know that it may sound odd because you’re probably thinking but it’s in your GENES, Sandy. You are ALWAYS disabled. 
BUT! If I were able to give every O.I. person a gift it would be an extended period in their life when broken bones and other related issues just Shut. The. Hell. Up. It was a time for me to experience life as a young 20-something – the whole scene that involved drugs, drinking, partying, clubbing, dating, making naïve mistakes, pulling all-nighters, pushing my body to its limits, and all the while enjoying the time I shared with my friends through all of the ups and downs.


Who doesn't have one of these pics from college??


 My self-image during this time was wrapped up in what I was capable of doing, not physically but mentally. I also learned how to have an impact through my presence, through the issues I wanted to teach others about, and the awareness I wanted to spread. I became confident in my knowledge and over the years basically swapped that with my otherwise unconfident person. I hid behind the human rights stats, and the policies on homelessness that our country was failing to change. I was still uncertain about myself as a person and who I was, and so I clung to the issues that I was so curious about and wanted to have an effect on.

After college was over I was accepted to law school but was uncertain of whether it was for me. I didn’t know what type of law I wanted to focus in, and quite frankly wanted a break from all of the classroom learning. So I did a year of AmeriCorps service and continued to bolster my self-worth through my year of service at a local community college in Boston. In this position I created a mentoring program and was able to further hone my leadership abilities and threw myself into the work. Our corps was always busy and I was always swamped during the program development phase; I fell in love with the work and even became incredibly interested in the education field – not as a teacher but on the policy side. I always questioned why so many of my students were so unprepared? How come my students were always underperforming? What was causing this? Where was the money going? How could this be changed? How would finding them a mentor best help their future education? More specifically I wanted to know, how was going to change all of this some day?

My friend and I showing off our AmeriCorps gear

Of course, as the saying goes -  all good things come to an end. And as wonderfully challenging and rewarding as my year was, my year with AmeriCorps eventually came to an end and I had to move on. I had no idea what I wanted to do… and found myself shuffled off into this grad program that I more or less wanted nothing to do with. I lost my sense of self, a sense of purpose, a sense of reason, and like a ticking time bomb that crate I had locked away in my head five years ago burst open. For the sake of privacy I would rather not get too much into the details but needless to say I was deeply depressed. It was awful. I hung out with no one, I stayed home, plowed through my day-to-day routine, self-medicated inappropriately & dangerously, until one day when I was finally working through some of my issues a friend of mine said:

“You know what you should do? You should start a blog and write about your O.I. I’m sure it would be really helpful to the parents of O.I. kids who don’t really know what they’re getting into or are learning how to handle things for the first time.”

And here we are today. I am a MUCH happier person, more confident in who I am, and for the first time in my life am dealing  with all of those things I locked away in a crate. And while I feel like some of those things are still so underdeveloped – I am playing a rapidly fast game of catch-up and am having so much fun doing so. I am learning a lot about myself, about YOU (my readers), about the things that make me uncomfortable, about why they make me squirm, and best of all I am now able to say that I don’t need the locked crate anymore. It’s okay to work through things, in fact it’s more than just “okay” – I’ve learned that you need to otherwise you’re not really living life, you’re just sitting on the sidelines pretending to play a game. 

So thank you, reader, for being so patient with me because whether you realize it or not you're actually on a journey to Who Knows Where with me. And I am slightly scared and very nervous, but having you along for the journey makes it so much better and extremely comforting :-) 

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Stable Disability, but an Evolving Self

This is going to be a II part post about how the concept of my self-worth has evolved as my attitude towards my O.I. has changed. 
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Self-worth, self-respect, self-esteem, self-image, self-regard... gah!

What do all of these words mean to a child or young adult with O.I.? I don’t know about you but I cringe at them. On the biological level my ‘self’ is broken, lacking in collagen, fragile, brittle, hard-of-hearing, fracture-prone, oddly-shaped, bowed, pip-squeakish, short etc. This is the being that I got to know during the first nine or ten years of my life. Throw in a pair of Helicopter Parents, the opinion I had of myself during these years was usually spelled out in the things that I could or could not do:

“I can’t run or play soccer with my brothers but I read well, I read all of my older brother’s books!”  
OR
“Dodge ball is too dangerous for me in gym class but I can play the piano for my friends during music.”

Everything was so black and white back then, so straightforward and there was always a crystal clear answer for me. I didn’t have to make a thousand decisions a day and I left the risks and the potentials for injury for the adults in my life to sort out. It’s pretty odd to think how ‘carefree’ my life must have been when you consider how much a part of my life O.I. was as a young child who fractured frequently. But of course I wasn’t some kind of robot pre-programmed to understand the genetics of O.I. like my body was. When my parents didn’t let me attend sleepovers, outdoor birthday parties, or field trips to amusement parks those “NO YOU CANNOTS” came at me with a harsh blow.
I remember never feeling like I was the right age, “but all the other kids my age are doing it!” Or that I was somehow even more different from everyone else than just my bone structure; it occurred to me then that O.I. wasn’t just limited to make me look and feel different – but greatly influenced my ability to do things as well. More specifically, if it involved some kind of physical component I grew to believe that I would either:
 1. Not be able to participate
 2. Need adult assistance.
I saw myself as a kid who would always be dependent on someone and my self-worth, like any other young child’s, was deeply seeped and tangled with that of my parents.

In middle school and high school I resented how much O.I. got in the way of me being able to participate in the social aspects of being a kid. Doing things with my friends like going to the mall, out to dinner, to someone else’s house, or to the movies always seemed like such a hassle. I envied the ease that my friends could just jump into the car and drive away without needing to consider accessibility of different places, the weather (do I feel like getting my wheelchair soaking wet today? Have the sidewalks been cleared of the snow?), or transportation logistics (will her dad’s car be big enough for my wheelchair? Is mom available to drive me to her house?). Middle school was the first time that I clearly remember despising O.I. Not to mention puberty made my body appear more alien to me and only seemed to highlight how different I already was from my friends. “Mom NO ONE at school wears Osh Kosh and Stride Rites anymore. GET ME COOLER CLOTHES!” My self-image became defined by the differences I saw between me and my friends, towards the end of eighth grade I was also moving away from the city and friends I had grown up with since Kindergarten – needless to say it was the first time I remember feeling a bottomless pit.

It wasn’t long after that I began to pretend I didn’t even have O.I. at all.

In high school I didn’t give myself excuses and told myself that I could trust my friends to carry me up and down stairs, or that they could carry me through 5ft of snow after a blizzard. One night I even climbed out the window of my house and got into my friend’s car (when he only had his learner's permit!) and trusted him to carry me in through the back entrance of his parent-absent house. (We definitely broke about twenty laws that night…) I did my best to ignore O.I. and its pesky presence. At this point my fractures had begun to taper off but I still had a few each year. I remember rarely ever allowing myself time to rehab when casts or slings came off. After my rod surgery in high school I spent about three days in the hospital before returning to my routine again. It was a mix of trying to assert independence, seeing how far I could go, and being exasperated by the limitations O.I. had been putting on my life. My attitude, at this point, began its evolution into becoming snarkier and more sarcastic. I talked to my teachers like I talked to my friends, I didn’t care about consequences, I was too curious for my own good, but was smart enough in school to know that I would never get into serious trouble. I talked my way out of everything and pulled the “I’m a cute girl in a wheelchair” card ruthlessly and without apology – O.I. became a tool that I abused more than it was a characteristic of my identity.

This photo captures my HS yrs well.

It would take me years later to realize that I was actually pretty depressed in high school. I recognize now that I used what O.I. was because I didn’t want to embrace it. I didn’t understand how, I didn’t understand why I should, and it was like a spare dominant hand that I didn’t know what to use for. The only thing that kept me from going completely over the edge and off track during this time was my writing and my close friends. I was still editor of the school paper and the literary magazine, and my friends loved me for my recklessness and the ridiculous things that constantly spewed out of my mouth; my wit was always on point and my tongue sharp and ready with a comeback. On the surface my self-worth and self-image probably seemed pretty high, I probably seemed like I was an overly confident little punk who was learning how to ‘spread her wings,’ but underneath all of my sarcasm and phony confidence I was in fact a very uncertain and self-hating teen who had no self-regard. 

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Dear Pre-Camp Self,

All packed & ready to go!
As I am getting ready to pack for camp there are a thousand questions poking my brain, dancing around my head with sly little smirks on their faces -- like they all have some huge secret that I don't know about. Usually I would be annoyed but this time I don't mind, instead of annoying me, this time around the unknown is exciting and it's also one of the few times in my life where the unknown hasn't cast a long shadow of fear!

As I am packing for the next five days this is what is going through my head:

"Why do I own 12 pairs of jeans?? This is absurd! And how did I pick-up so many free t-shirts from those non-profits that I worked for and interned with?! I literally have an entire wardrobe of idealistic slogans and calls to save the world!
I have no idea what I'm getting myself into as a camp counselor but that's okay. I am telling myself it's going to be fine because I will fall back on my love of helping others, of working with kids, of helping others face challenges, and I hope I will be laughing throughout the entire week. Yes, even when that huge creepy crawly comes near me in the middle of the woods in Maine - I will laugh. As opposed to screaming like the pipsqueak that I can be... okay, I will try my hardest not to scream.

Seriously though:
I am most curious about the group of kids that I will be working with. The camp is geared towards kids who fall somewhere on the Autism spectrum (some have other disabilities as well) -- and I'll admit that I have little to no experience with working/camping with kids with Autism. But I have been assured that no prior professional experience was needed so what can I say? I really am just a sucker for adventures and mystery! Usually I would have done all the research, talked to my friends who were Special Ed majors in college, or thought about various scenarios and how I might react - but not this time around.

From what I know of Explorer's Camp it seems to be just like any other mainstream camp but with the flexibility in the schedule, a and day-to-day routine that works with the various challenges the campers may face. Whether it's extreme anxiety, difficulty following directions, or participating in group activities... ultimately I get the sense that at Explorer's Camp it doesn't matter what the challenge is, the camp works for and with the child. How I wish the real world, the world beyond Explorer's Camp, beyond the next five days that I will experience could function like that always! Imagine a society that works for and with any disability! It almost sounds like a vacation from my usual routine! Instead of the individual constantly needing to find ways to adapt to the everyday, this time, at least for a little while -- it will be my job to help flip their societal expectations a bit. Of course, I am not naive enough to believe that in the span of 5 days I will reverse societal expectations of how people with disabilities live their lives, but it is my hope to help someone at Explorer's Camp believe that it just might be possible."

So that is what is going through my head and I can't wait to update my readers on what my experience was like when I get back. In the mean time, I hope you enjoy the rest of this week's blog posts while I'm away!!

Rays of shine,
Sandy


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Can I Ask You a Question?

One of my loyal twitter followers noted that these questions ALWAYS start off like that. I know what your mother and your teacher told you but there are such things as 'stupid' questions. Being in a wheelchair and 'looking different' I have gotten all kinds of practical, and the more absurdly ridonkulous questions thrown my way. I will share a collection of the 'Special' Questions that made it into the Truly Stupid Questions Hall of Fame. And yes, I actually did give these responses.




Q: Have you ever broken a bone from farting?
A: No but we can try it out right now if you want

Q: Can I play with your wheelchair's joystick?
A: (Usually I scream this at the top of my lungs) STOP MAN HANDLING MY JOYSTICK! 
Many of my friends have asked me this because they think it's fun or 'cool' to drive my wheelchair; I guess if you're my friend there are certain perks to rollin' with me ;-) But I'd like to say something else about this question -- It's slightly stupid to me because in my mind it's like asking someone who is able-bodied "Can I play with your legs?" You try asking someone that and let me know how that goes for you. 


Q: How do you know when you've broken a bone?
A: ....Cuz it'll hurt...like... a sh*t ton!
I think it's similar to asking someone how do you know when you have a migraine or a headache?

Q: You went to college?
A: I didn't just GO, I even graduated!


Q: How fast does your wheelchair go?
A: It goes as fast as I need it to go.
Q: So like 30 mph?
A: No, I don't need it to go 30 mph. It goes as fast as I need it to go, most importantly it goes faster than you.
I don't really understand the fascination with people wanting to know how fast things go. Okay, it is pretty cool and all but... so? In the end people who walk are usually still panting out of breath behind me, or just annoyed that I am not waiting for them. 


Q: You can go to the bathroom by yourself?!
A: Yeah, I even know how to work those automatic hand-dryers and soap dispensers....All. By. Myself!


Q (over the telephone): Wait you're really over 18?
A: Yep. I know I sound young over the phone, I get it a lot.
Q: I can't believe this! You sound like you're about 9! Where's your mother? I don't believe you, prove it to me. Is this a joke?
A: ...it's about to be a joke because I am about to laugh at you for being such a cretin you ginormous tool shed.
Q: Oh. Okay. Yeah...uhh..I guess a little kid wouldn't know those words.

Q: How do you get dressed in the morning?
A: I have fairies that come out of my closet that put clothes on me the same way the little birds put Cinderella's dress on

Q: How do you sleep?
A: Hanging upside down from the rafters in a bubble, breathing in special calcium air that helps my bones get stronger.


Tell'em Like It Is: 
  • I know that in most of my tips about communicating with others I am always urging people to be considerate, patient, and polite. But sometimes the situation calls for just giving other people a straight-up honest answer. Maybe a little too honest at times
  • Try to have an amused tone when you give snarky answers; there's a difference between giving rude snarky answers and sarcastic/amusing snarky responses
  • Be confident about yourself when you respond! People are asking YOU the question, so you should stick to your opinions and beliefs, don't worry about what others might think. If they wanted to they could have asked someone else the question instead, but they asked YOU
  • Sometimes questions can seem downright rude. Whenever I get these kinds of questions I make sure that my response includes a tone that lets the other person know that 1. I am slightly offended 2. their question was not okay 3. they better get ready to get slammed back!



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Dear O.I.,

We have known each other my whole life and you never cease to rip me a new one, humble me, motivate and inspire me, teach me, and chuck curve balls at me to no end. I'm not writing this letter to tell you that I am thankful for the fragility you have bestowed upon my perspective (because how many times have we already heard that?), and nor am I writing this letter to express how irritated I am with you for side-lining me in so many of life's events (don't worry, I'm over it...almost). This letter is being written because I want to make sure you and all of your malfunctioning little collagen protein pals know how I feel and what I think of you. And to be honest I don't always know myself, so I hope you're ready for some confusion.

First let's go back to when I was around four and attending my first birthday party ever. The fact that my parents had let me go, despite your overbearing presence in my life at the time, was huge. It was at a Chuck 'E' Cheese arcade center - complete with a ball pit, ticket redeemable prizes, and dancing life-sized characters on stage. I don’t remember the order of events but somehow I found myself sinking into the maw of plastic primary colored balls. I enjoyed swimming my way around the piles of plastic balls, I smiled my tooth-less smile at other kids I found along the way, and wanted to see how deep inside I could go.  Needless to say that was a terrible decision and you had to prove it to me by smacking down my little four year old self with an epic smack down, one that was hard enough for my femur to be snapped in half. I don't remember if some other kid was involved or if it was my own excited idiocy that caused this break, but I am still a bit annoyed at how swiftly you squelched my childish joy. And that was the first time I realized how quickly Big Mysterious You, could really show Little Caught-Off-Guard Me.


“Oh crap where did we park the car? Does anyone remember which row and lot it was? What letter was it?” My family had just spent the entire day at Disney World and after all the stomach lurching, high flying, and twirling rides we were exhausted. We stumbled around the parking lot, trying to guess which quadrant of the town-sized parking lot we had left the rental car.
“You guys we obviously parked in the handicap section, let’s go ask where that is.” Everyone looked at me like I had uttered the most brilliant idea since sliced bread. Not long after we found the right section and only had to look for the wallet sized snap shot of me on the handicap placard that hung in the window shield. That’s only a simple example of how you have allowed me to help my family. There have been other ways too, like the time my entire family was able to live in one of the best suburbs of Massachusetts in Section 8 housing because our family has a disabled family member. I spent Kindergarten thru eighth grade in that idyllic city; essentially I grew up knowing that I would always have a purpose. Then, when we moved out of that suburb our family moved into an even better suburb. We moved into a house that was completely fitted to my needs; sure some of my friends in high school may have had their own bathrooms, but did they have their very own driveway? What about their own door to enter and exit from? 


But O.I., those are all materialistic things. I grew up incredibly confused about our relationship. Did all the hundreds of fractures or hours of crying my parents spent equal a house? Top-notch public school education? A safe environment for my brothers to be raised in? A dependable parking spot? The liberty to cut lines at amusement parks? I still don’t know the answer to those questions, and sometimes I think it doesn’t matter if I ever figure it out because we all turned out fine.

When I’m waiting for my orthopedic doctor to examine another one of your “pranks” I want to give you an earful. Usually I am too exhausted and preoccupied to really let you have it so I guess now is my chance. Seriously: What Is Your Problem? Sure maybe I shouldn’t have been dipping up and down on the see-saw, or maybe I shouldn’t have been playing four-square with a basketball, and I probably shouldn’t have been racing in my power wheelchair down the icy hill. But what about the time I was just reaching for my walker, the time I was getting out of the shower, or the time I was just sitting there and the bike fell on me? Were those things my fault? Should I not have been doing that? What were you trying to tell me? The sharp burning sensation of your scoff and laughter at me is less than appreciated. In fact, whenever I feel your chuckles I want to choke it, stuff it with my fist, cram a bunch of wet socks into your mouth and end you. How dare you, and who ever gave you the right to interrupt my life like that?
So, whenever I am lying on the metal table and waiting for the x-ray technician to idiotically ask if I can turn over on my side after breaking my femur, I am glaring at him but really I should be strangling you. THAT guy is only doing his job, but YOU – you are the cause of all of it to begin with. And I despise you for all the misplaced anger, hatred, and guilt that you have allowed me to foolishly dump onto innocent bystanders. 

For someone who, by your own existence, requires living a cautious and careful life – you certainly don’t have any restraints when it comes to pointing a finger and playing the blame game. You have let me wildly release my spite and irritation, or more often than not – because I usually try to be the greater person and the sensible adult, you have sat there smirking and twiddling your thumbs as I blame myself.

Now that I’m an adult I have begun to see your wily and twisted ways. There is no doubt that it will take me quite sometime to manage the mind games that you play, but I am getting better at them. Everyday I am learning how to deal with you. So go ahead, keep throwing those 900mile an hour curveballs and laugh all you want as they slam into me, keep trying to get the upper hand, throw me your best for all I care - but at the end of the day the joke is on you because ultimately it’s my life and it won’t ever be yours.

Bring it with all your best,
Sandy 

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Volunteering to Out-Prove My Disability?

At first I did it because we all had to. I was in the 5th grade and we were each assigned a 'Reading Buddy', a Kindergartner who we would read picture books with and then do some sort of literacy-related activity. I was roughly the same size as my Reading Buddy but I remember reading together all the classic favorites like Corduroy, Chicka Chicka Boom Boom, countless Frog and Toad adventures, and Dr. Seuss' Yertle the Turtle and Other Stories. Back then my favorite thing about Reading Buddy Time wasn't the fact that I was helping some six year-old guess at "what might happen next?" It was the fact that I got to read, and then as the year went on I loved the fact that I was helping my Reading Buddy learn to read, and hopefully - love reading as much as I did.
I also enjoyed the fact that although I was a kid who might be the same size as a Kindergartner, and might have still needed to be pushed on the "baby" swings - it was possible to have someone else look up to me. More than that though I was also able to help this other person share in an activity that I loved so dearly. While it's quite some time ago and I can't remember how it exactly all made me feel, I imagine that I felt important, purposeful, and for once - I probably enjoyed the feeling of being able to offer someone else help as opposed to it always being the other way around. For a ten or eleven year old kid who was always the only one in her school in a wheelchair, that last feeling was huge.

And so it began: I grew to want and love helping others.  


As I grew older I volunteered at Special Olympics, sang at retirement homes, and tutored younger students. Though I never really consciously thought about it at the time, I am sure that a part of my drive for volunteering began with wanting to "prove something" to others. I'm not sure if it was ever just one thing I was trying to prove, but here are a few that come to mind:
1. I don't need as much help as some people might think I do
2. That I have something to offer to society
3. I don't expect to always be on the receiving end of assistance in society

In college I became more involved in volunteering on a different level. During this time I actually avoided one-on-one volunteering opportunities (i.e. feeding the homeless, doing a shift at a food pantry, or helping underprivileged girls find the right prom dress). At the time I wasn't sure if I really believed that those efforts "worked" or made any "real" dent in the larger-scale issues like poverty or homelessness. But more importantly I avoided those opportunities because I wasn't sure who I was yet. I still felt that I had something to PROVE about being disabled while being able to help other people, I just wasn't sure what it was! I didn't believe that I could offer anything to people in those situations (because they were so different from my own), and instead focused my student-run club (Students for Social Justice) on spreading awareness on bigger picture topics. We invited guest speakers to campus, had discussions after we watched documentaries, or went to protests. I still loved helping others, and at each club meeting or event I was fired up and motivated by my passion to educate others on the issues.
The months and weeks leading up to graduation I had a lot of big decisions to make. I was swamped with finals, law school scholarship applications, trying to decide whether or not I wanted to go straight into law school, or if I should continue figuring out what it was I wanted to help others with. Because law school is such an expensive and mentally intensive commitment I figured that if I was uncertain about it then I probably shouldn't force myself to go. So instead of going straight into grad school I opted to do a year of service with AmeriCorps. I wanted to figure out how I could best serve, in what areas of society, and with what populations; law school I knew would always be there waiting for me.

After too many AmeriCorps applications and researching programs I decided to go with an AmeriCorps Mass Mentoring program - this is a corp of (mostly) young people who serve in mentoring programs throughout the state of Massachusetts. Why did I choose the area of mentoring? I have been incredibly lucky to have many mentors in my life. Because I was the only one in my family who was disabled and had many different interests from the rest of my family members, I always sought out mentors to help me in things that I was interested in or struggled with. I recognized that I would not have gotten to where I am today without my mentors and also realized that many students fall between the cracks and miss out on meeting that important connection to another adult in their life. So for an entire year I spent developing a mentoring program for 18-24 year olds at a local community college in Boston!
The work was exhausting and I was frequently frustrated but what kept me going was that similarly to my love for reading, I truly believed in the importance and effectiveness of mentoring. I knew that if I could only have ONE student go through the mentoring program having had a positive experience, and understanding the importance of having a mentor in his or her life then I would be successful.

That was last year, and now a year later I have a better sense of the population I know I can best serve and why it is important for me to work in that area. But what I think is most important to me is that I have come to understand that I will always continue offering assistance to others, but it won't be because I have "something to prove" - now it's because there will always be something in my life that I love (whether it's a way of life, an activity, some issue I am passionate about, or a hobby) and want to share this with someone else.

This is the group of AmeriCorps Ambassadors of Mentoring I worked with!
Tips on Volunteering:
  • A common misconception is that many volunteering positions may require a lot of physical labor. This isn't true at all! 
  • I have found that volunteer programs and coordinators are some of the most open-minded and accommodating groups of people that I have ever worked with or come across
  • Many states will allow you to be involved in a volunteer program while receiving a stipend. These stipends usually do not conflict with the disability benefits that you may be currently receiving
  • Whatever your reason for volunteering just remember that you might not get out of the experience what you were expecting. Most of the time when I have been involved in volunteering my perceptions of situations or people have changed, and for the better!
  • Know that during an interview or screening for a volunteer position - you are never required and nor should you ever feel that you have to reveal the specifics of your disability
  • I have come to find that while volunteering the relationship is one of the greatest moments in my life and in society when the playing field is leveled. No one is judging, staring, or making awkward comments about you - it's always only about the service or help that you are providing! 

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