Showing posts with label disability expectations. Show all posts

Back at Square One

By | Published Thursday, February 16, 2012


As a technology dependent nerd who always has her power wheelchair cranked to the highest speed, I have become someone who expects instantaneous results. These are no longer just habits of mine but have become a way of life, and it's not something I'm necessarily proud to admit.
I'm driven by progress that is tangible, things that I can see and acknowledge so that I know what to do next in order to reach my goals. Those are often the day-to-day things that drive me to continue. When I have a great one-on-one session with a client I am energized to do follow-ups. When I do well on an exam in school I can factor that into my GPA and make note of the study tips. When I successfully talk my friend into buying me lunch I know what methods of persuasion will work for the next time. But what about the things that I have less patience with? What about the things that aren't so tangible and the progress I won't be able to see for years to come?

Slipping my wrists through the crutches I recalled to memory the crutch, step, crutch, step pattern that I had just gotten under my belt before the rod operation. It was now eight months later and my physical therapist had gotten the green light to have me walking again; she was excited, I was cautiously excited, and everyone seemed to expect the latest rod operation to do wonders. There was talk of me walking for longer distances, for longer periods of time, maybe even some day navigating stairs in the crutches. But at that moment I couldn't see the end result and was frustrated that I had to begin at what seemed like square negative eight before getting to even square one. I even thought to myself "why am I doing this when it's just so much easier and faster to zoom around in my chair?"
I sat on the foot plate of the chair, crutches dangling from my wrists and looked up at my physical therapist,
"I have to start ALL over again?! This is gonna take forever and be so slow and annoying."
"It's going to take time but you'll get there." She assured me, motioning to get a move on already.

So I took a few steps and walked for about 15 yards and every ten yards my P.T. would ask me "how do you feel?" I was focused on the floor, my brain had little else going on in it aside from the crutch, step, crutch pattern - remembering which foot to move when after which crutch had moved forward. Without ever looking up at her I kept my eyes trained on what I was doing, I told her I felt "fine" each time she asked. In my mind I was eager to get to meet the expectations everyone had about me walking further and longer, I wanted to do it on the first day back to walking. I wanted results and immediate progress.
After however many yards my legs started feeling weary, my arms trembled a bit in the crutches, my palms had become sweaty against the grip, and the next time my P.T. asked how I felt I gave in and said "tired now."
"Do you think you can walk back to your chair?" She asked me. Slowly, I turned around and looked at the distance I had covered, it was enough to make the chair look like a speck in the background. I could just barely make out the foot rest that I had sat on just twenty minutes before.
"We can sit on the carpet and rest for a few minutes before we head back" she suggested.

In my naivety to break expectations and shatter standards on DAY ONE, I have slowly come to realize that there is a huge gap between day one and the eventual realization of my goals. What fills this gap? Persistence. Focus. Determination. But above anything else, most of that gap is going to consist of your energy to keep the urge to quit at bay.


Fight the Good Fight:

  • Don't get lost in translation. When you think about step one and how it will ever get you to your goal, it's easy to get intimidated by that distance. But don't feel warped by the distance! Translating step one to meeting your goal means taking just one step. And that's all that it means. 
  • Be realistic. Goals are goals because they require a plan and a time frame. Tasks are things that take less than a day to complete or require fewer steps. Ask yourself, are you completing a task or a goal?
  • Don't miss out on anything. Despite the thousands of ways that we can now record and share our lives, it's still easy to miss out on opportunities and people if you're always rushing to complete a goal for the sake of completing a goal. Look around every now and then, evaluate, recommend, or maybe take a few steps back. 
  • Look back. When you do take that first step remember how great it feels. The thrill, the excitement, the uncertainty, maybe even the terror of it - so that as you're moving on towards your goal you can strive to create more of those moments or relish in the progress you are already making! 



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

By | Published Thursday, December 1, 2011

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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Failure: it's O.K. to not be O.K.

By | Published Monday, November 14, 2011

It was the day my LSAT (law school entrance exams) scores had arrived. The unread envelope sat ready to burst at the seams in my e-mail inbox, highlighted with an exclamation point next to it ... as if the subject title did not make it important enough: Your October 2008 LSAT Scores.

My palms and forehead immediately flooded with a panicky sweat. My stomach flopped like fish out of a pond. I felt cold and clammy. In my head I imagined myself to be a helpless frog in the middle of a swamp, about to be devoured by the merciless predator that was My Unknown Future. 
"OMG Your scores come back today right?? Omg. How did you do??" Online my friends were IM-ing me. For the past few days I had been on edge and they were all well aware as to why. Their flashing messages did little to distract my attention from the unopened message in my inbox.
"I haven't opened it yet. I'm nervous. I can't do this right now." I typed back to them. 

It was junior year, my third year of college and like so many other students I was thinking about what I wanted to do after I graduated. I knew I would have a year to prepare and give more thought to it, but I wanted to get all the annoying grad school tests out of the way. That summer I had taken one of those LSAT test-prep courses. While many of my friends were enjoying easy summer jobs I was interning and then after work forcing myself through mundane exercises and rote practice sets. For six weeks I sat in a blue colored room that had no windows, in a classroom set up in rows, holding a number 2 pencil... trying to remember reading comprehension tips, and how to find the assumption that sentences were making. It was painfully boring and if you know me, I am not one who is able to learn for the sake of learning. And when you study for a standardized exam, that's really all that it comes down to. Studying strategies for the sake of strategizing. At the end of the summer I finished the course and had taken the 6 practice exams that came bundled in that package; my instructor said that I was doing well and I was scoring in the range that I wanted to. Though the class was boring, at least some semblance of progress was being made as I darkened bubbles and gnawed at number 2 pencils.
During college, despite the shenanigans my friends and I were up to -- I was able to hold my own. I did fairly well academically and was involved in student clubs, was a leader and was more or less confident with the brains I was building upon. Going into the test I knew that this was only one piece of the package to my law school acceptance. I was confident about my grades, my internship and work experience, and I knew I would shine most on my essay/writing ability. Thankfully, the exam had an essay component to the test.

"Okay. So take a deep breath. Grab a beer from your fridge. Drink a big gulp and then just open the email. Also, remember, it's just a test. You have a year to take it again." One of my friends had messaged me back online. I did what she said and opened the email.

The LSAT is graded on a range from 120 - 180. I got a 154. I was somewhere in the 50th percentile mark. Angrily I gulped down the rest of my beer, and stormed out of my dorm room. I slammed open the front door and sat in my wheelchair on the porch of the dormitory. Outside, it was pouring rain. I am supposed to be better than average. The score I got was unacceptable. I failed. No good law school is going to accept that. In my mind, I failed myself and there was nothing worse.
My entire life I was raised with high expectations, this was especially true when it came to school. Even when it came to subjects my parents knew nothing about my brothers and I were expected to do well. There was no exception and no other options. That night I drove around town in my wheelchair in the rain. I felt miserable, angry, and disappointed in myself. The last six weeks of the summer seemed useless and a total waste of money. I began crying and at some point between the self-disappointment and the pressure, I talked myself into believing that those 3 numbers would be the end of the world for me.

That night my friends became worried. I showed up at the dorms drenched from the rain, my eyes blood-shot from crying at 3:30AM. They didn't have to ask to know that I didn't do well.

Looking back at it now it seems silly to me that I allowed 3 numbers and my first try at something determine so much of my future. I struggled with it because I had allowed those 3 numbers to be the lens in which I viewed the world and my life. I forgot who I was and had completely lost perspective on the situation. I was too seeped into the academic world that I had become so involved with. I was surrounded by classmates and professors who all believed that I would do well. The implications of those numbers was difficult for me to swallow because people expected me to be the student who always did well. People knew that I had a reputation for getting work done. People assumed that I will do incredible things with my life.When I finally calmed down enough to be able to think straight I realized people came to that understanding not because they know about my GPA or test scores. It's because they saw me live every day. Day in and day out I didn't let other people's expectations or assumptions determine my future. If I had done that I knew I probably would never even make it out of bed in the mornings.
To this day though it's still hard when I don't meet my own expectations. But I have gotten better about keeping my perspective and reminding myself how I got to where I am today. I have long accepted that it's going to be an ongoing struggle for me but oddly enough, this is a struggle that I am thankful for and continually humbled by. 

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"You shouldn't let her do that."

By | Published Tuesday, October 25, 2011

The second we entered the Children's & Young Adult reading room I'd squirm out of my dad's arms. At that point I was still about the size of a three year old but was actually between the ages of seven and ten; my manual wheelchair wasn't yet fold-able and so my parents thought  it easier to carry me everywhere in their arms. They'd set me down on the carpet and, as if I were in my own home, I'd comfortably do a crawl-hop around the bookshelves - pointing to the ones I wanted as my mom or dad took them out for me.

When I was much younger my mom would bring me to the library with her. Every week we'd come and she'd set me down on the soft red carpet, showing me how library books were organized by author last name, and how to tell which books were appropriate or good for me to read.
"You see how this label has the 'An I Can Read Book' on it? Those are the ones you should choose." Soon I would learn to not only find those labels, but also recognized the pictures on the cover and then the words of the title - unsurprisingly many of these books turned out to begin with Frog and Toad....
"Do you see this shiny medal sticker on the book? That's also a sign that it's a good book." Most of the time while she was doing that I was clambering on top of the over-sized stuffed Curious George that sat slumped in the corner. That was my routine every weekend, from when I could first confidently crawl-hop around until at least the first grade.

As immigrants to the country my parents didn't know what made-up the canon of children's literature in the U.S. So as I got older they were unable to choose books for me, couldn't decipher which were the 'good books', but still they would insist that I read all the time. Soon they entrusted my literary education to not only my teachers at school, but to the librarians and the reading lists organized by grade, kept filed away in a milk crate. My dad would pick a list and I'd simply make my way down it, crawl-hopping around to each of the towering red shelves. I'd crawl to the end of each shelf and from the ground look up at the index card taped to the side, following the instructions my mother had taught me years before about the alphabetization of author's last names.
Thinking about it now it must have been quite the odd little sight. There was me on the ground bunny- hopping around. My dad standing behind me with the list in hand following my lead, usually holding one of the little reference pencils (the ones that never have erasers) to cross off each title that I found. If I was only borrowing any less than four books I would shove them along in front of me, pushing them ahead on the floor like a stack of hockey pucks and then bunny-hop towards it. Being low to the ground I never paid any attention to the other adults around me, and the librarians all knew my name and were used to my 'peculiar way of doing things,' in fact if anything they loved my act! But once in awhile I would see the reaction another adult had whenever they saw what was going on,

"You know, you really shouldn't let her do that." I recall one lady telling my dad.
"Pardon?" My dad had set the stack of library books by the check-out counter and had picked me up while we stood in line.
"Why would you let your daughter crawl on the floor like that? It's dangerous and probably not very clean." She continued in one of those obvious-parental-styling voices.
"She's fine. She's not as young as she looks, she's eight, almost nine. It's not like she'll eat things off the floor. This is just the way she does things. She doesn't bring her wheelchair to the library." I watched my dad trying to explain and could see his words bounce off her face like rubber balls off a wall. It was pointless. Even at that age it was clear to me that she would never understand even if we spent all day explaining. And, perhaps more importantly, it was also clear to me that it didn't matter whether or not she understood my 'way of doing things.' My dad explained all that he felt he needed to explain, he spoke truthfully and defended his daughter's differences. That was all the situation required and as his child I learned that most of the time you won't ever get people to see your perspective, the point was that you tried and gave it your honest effort. And then you continue on doing your own thing because it works for you. At the time bunny-hopping and crawling around the library was what worked for me and that's all that mattered.

The line had moved on and it was our turn to check-out our books. I tugged forward and leaned towards the smiling librarian who was waiting for us, like a horse following the pull of its reins my dad walked up to the counter.
"Hi Sandy! Did you find everything you were looking for today?" I happily nodded at her and watched her scan the books, sliding it over the mysterious metal scanner and into a plastic bag. As my dad hoisted the bag over his shoulder and held me in his other arm I waved good-bye,
"Have fun reading these, I can't wait to see what you get next week!" 
--
Side Note: 
I can't stress how important reading is for children. Literacy and education are probably among my top three most important 'causes' in life. Every time I write another blog post I am always humbled by the comments and feedback I get, sometimes they are about the tips I offer and other times about the stories I share. Whenever someone compliments me on my ability to express myself though I always think back to those days that I shared above. Had I not been pushed to read, read, and read - this (among so many other things) probably would never have been possible to begin with. SO PLEASE, READ & READ TO YOUR CHILDREN!

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Disability & the Un-wanted "Fame"

By | Published Wednesday, September 21, 2011

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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5 Things I wish I could do...

By | Published Thursday, September 8, 2011

In a previous post I had mentioned that there are a handful of things I wish I could do but I can't, for everything else I have figured out an alternative. Here are those 5 things:


1. Run a marathon. Well, I wish I could run in general. I'm a sucker for all things fast and speedy. But there is something about marathon runners that's incredibly dedicated and determined. To be able to say "I pushed my body through 26miles.." is probably something I won't be able to do any time soon.

2. Snowboard down a mountain. A lot of my friends snowboard. No, I don't want to ski - I want to snowboard. My friends make it sound cool and it looks awesome! Besides there aren't too many ways I can really enjoy winter and the never-ending piles of cold white stuff that we get here in the Northeast. To race down a mountain on a board, fly through the air while you're doing gravity-defying turns and flips, and then land upright (hopefully) -- what's not to love?!

3. Diving into a waterfall. I can't really explain this one but it's just something I want to do.

4. Climb stairs in my wheelchair. This would solve a lot of my day-to-day problems, not to mention it would make it SO much easier to hang out with my friends (most of whom are not wheelchair users). Not only are these special chairs way out of my budget but I also doubt my health insurance would ever say yes, climbing stairs in your chair would dramatically improve your physical health - we will buy it for you. Even if I did somehow manage to get one in my possession some day, I would probably still be paranoid of it malfunctioning in the middle of the staircase or something! What can I say? I'm suspicious of technology..

5. Stop breaking. This would be the ULTIMATE dream for me - but it's not something I've figured out how to do yet. I know, I know, we can't STOP breaking but we can do our best to prevent fractures from happening and strengthen our bodies so that fractures are not as frequent -- but don't we ALL wish we could just STOP already?!


For everything else that I have ever wanted to do that may have seem slightly ... impossible.... I have either just done it with all the risks & consequences in mind, or I have been lucky enough to find an alternative. As someone who is an adult, my capacity to "just deal with it" is a lot greater than when I was five years old, and unable to "deal" with not being able to run around with my friends. There isn't an easy answer to teaching kids that unfortunately their disability is limiting in some capacity.


(Major bonus points & automatic friend for life if you message me telling me how I CAN do one or more of those things).

Tips on "getting over it" :

  • Instead of saying "You can't" it's less harsh and less definitive if you said "I'm not sure..." or "I don't know..." 
  • Don't bullshit. At a certain age it's appropriate to cover things up and say "well you can't go on the Superman roller coaster but the kiddie one is just as fun!" But after a certain age we all know that's just not true. Being honest and owning up to the facts and reality builds on a younger person's ability to cope. "I worry that you might get seriously hurt if you went onto the 'bigger' kids' rides.." is legitimate, honest, and also introduces the idea of consequences
  • Personally I have 'gotten over it' by finding things that only I can do well that other kids aren't able to do as well. These are things that I am passionate and interested in, practice a lot of because I enjoy doing it, and have found my own 'thing' to hold over other peoples' heads and have THAT be out of reach for THEM
  • Allow the time and ability to express how upsetting it is to not be able to do something. Brushing it off and moving forward too quickly is just another way of 'covering things up' and it will feel like you are not legitimizing a young child's feelings or dilemmas




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Top 5 Awkward Moments

By | Published Wednesday, September 7, 2011

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


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

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

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

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

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

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Stable Disability, but an Evolving Self (Part 2)

By | Published Wednesday, August 24, 2011

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 I 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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Dear Pre-Camp Self,

By | Published Monday, August 15, 2011

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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