Showing posts with label OI college student. Show all posts

When We Don't Fit Into the Egg Crate

By | Published Wednesday, June 13, 2012

My parents used to tell me about how when I was an infant they would carry me atop a foam egg crate pad, instead of holding me in their own hands. I guess the dimpled ridges offered just enough support beneath me, and at the same time the foam provided just-soft-enough-padding that prevented sores on my skin. In my head I always picture it like I'm one of those Faberge eggs balanced precariously on top of a velvet cushion. Except, of course, I'm worth a whole lot more... :-P

Those were the days when I could still fit snug against the grooves of an egg crate. Those were the days when despite how terrified my parents were of handling me, their hands were always holding me up beneath the padding. Their fingers never far underneath the layers of casts, cotton stuffing, pads, or ace bandages - their grip that held onto me seemed stronger than gravity itself. Indeed, their pull on me towards them was the first gravity I ever knew. (Isn't that the truth for everyone?) 

Then I got older and a little bit stronger. My parents grew more confident and their knowledge of how to best lift me became second nature to them. I would soon learn how to do my own transfers with and without casts on - most of the time it was against doctor's orders, and all of the time it was through trial and error. Suddenly there came the day when there was no need for that foam egg crate pad anymore. I had outgrown the need for its softness and my parents no longer needed it as a shield. We had all, slowly but surely, become more comfortable with me growing into my own skin and abilities.

Growing out of that egg crate pad wasn't easy though. There were frequently times when I got frustrated because I didn't seem to belong anywhere, couldn't find the groove that I could fit myself into again; at least not in the same care-free, worry-free, judgment-free way that the foam egg crate pad offered me as a baby. Although I never really experienced growing pains, fumbling out of that physical nest certainly had its own internal pains for me - particularly as a teenager. Questions like who am I outside of my disability? How much do my friends judge me for the accommodations I get in school? Can I expect others besides my parents to provide me safety, comfort and support? How do I ask for help in a non-sissy way? Does my tough sarcasm actually make me seem less weak? Oh, the questions filled pages upon pages of journals that ran around in circles in my head or on the side margins of my class notes. They seemed to run on this endless treadmill that I thought would finally stop after I gave up on looking for answers. 

I never did give-up looking for answers though. Eventually I figured out the answers to my questions, and surprisingly many of them I think I knew in my head -- just didn't have the gall to admit it to myself at the time. Most of the time the answers came to me through pure serendipity, on occasions when I wasn't even looking for a solution to anything - I just happened upon them by going through my day-to-day routines and trying things out. Soon these answers came to me enough times that I began to recognize the pattern. It was something like I won't figure out all of these questions right away, but I will figure them out eventually and they don't need to bog my daily life activities down just because I'm uncertain about something. I just have to keep trying and keep stumbling across the right people at the right time, because it seems like that's what everyone else is doing!

At some point that thought process has become my 'egg crate' so to speak. It became my own source of comfort and safety, those are the thoughts that now serve as my gravity to getting myself back to moving forward.

"Sandy did you see what's on the Suggested Items for Your Dorm list?" My mother asked.
"Sheets, laundry hamper, desk lamp, snacks.. the obvious stuff." I mumbled, bored already.
"They also listed a mattress pad. An foam egg crate mattress pad because the dorm mattresses are really hard."
"Oh...so..?" I looked at her dumbly.
"Do you remember when you were a baby.." She began the story again.

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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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History Accommodates

By | Published Wednesday, November 9, 2011

The winter of 2009 was an exciting time for me. It was senior year of college. More specifically the LAST semester of college! I couldn't wait to graduate, to get started on "real life", to take advantage of the opportunities that were waiting for me, to finally.. START!


That year I had been interning at a small nonprofit that was creating major movements across the nation. Through the incredible vision of its powerful and idealistic leader, the organization was creating national issue based campaigns that mobilized coalitions of other non-profits, social entrepreneurs, policy makers, leaders in the private sector, and even those in the armed forces. It was through this organization with a staff of less than 20 that I first fell in love with creating large scale impact and social change. Honestly, I could spend months talking about the things that we did and all the community organizing, and grassroots mobilization that I learned - but that's not why you're here. 

You're here to find out about how I went with some of the most visionary individuals I have ever met to America's historic 2009 Presidential Inauguration of Barack Obama. Not only did I go but watched as some of the staff participated in the march, attended the youth ball, did community service and .. so much more. I was caught in this momentum of one major national event after another, and barely had time to breathe as I found myself surrounded by the major participants. It was unreal. 
It was 3 days before the entire staff and I were due to fly to D.C. As the intern I was making double, triple, and quadruple checking the numbers of those registered for our inauguration week events. In the background phones were ringing off the hook, staff members had a blackberry in one hand and their desk phone in the other - it was clear that we were busy with last minute event preparations. 

"Hey Sandy, so are you all set for D.C.? Do you have a place to stay and stuff?"
"Oh yeah. A bunch of my friends and I will be going together and we're crashing at a friend's apartment."
"Alright guys! I just emailed everyone the final event schedule for the week. Please email me back the time you will be arriving in D.C. and your cell phone in case we need to reach you." 
I opened the schedule and was thrilled just reading the event locations, never mind what we would be doing there. But because we were the organization that was hosting these events, the times that we needed to be there were a little less than thrilling. For several events we would need to be there at 7 or 8AM sharp, for one of them even at 5:30AM. As a college intern in her last semester, I was still honestly struggling with getting out of bed before 10AM. 

But then a major problem suddenly dawned on me. For weeks every single major news outlet was covering the Inaugural preparation for our nations' first black president. There was talk of tightened security. Closed bridges. Closed roads. Limited taxis. Closed rail systems. How would I be getting to these places?? 
"Hey umm.. I have a question. How are we getting to these places?"
"There's going to be a car that we've hired to pick everyone up... oh.. shoot.. wait. We don't know if it's wheelchair accessible."
For the rest of that day and the next two days after that we scrambled to find an accessible van. It seemed as though every single company that we called was already booked. Or they were simply unavailable. Or they just weren't going to be driving around during that week. 
"Sandy, don't worry we're going to figure this out. You've been with us for the past year you're definitely coming with us. You should be a part of this too because you worked on it just as hard as we have." 

At long last, merely one day before everything was to begin the organization found a wheelchair accessible van. Actually, it was a limo. A 25 passenger limo that showed up at 5:30AM one morning in front of my friend's apartment. Oh, and it had driven over from New Jersey. The sun had yet to fully rise and it was a freezing cold gray January morning; but I was not only in D.C. for a momentous moment, I was actually going to participate in the history that was in the making. There was no time to be tired, no time to be exhausted, no time to be complaining about the cold. As I boarded the lift I smiled at my friends as we were all thinking the same thing, this is it - change is here and the world is waiting. 

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To Reveal or Not to Reveal?

By | Published Wednesday, October 5, 2011

Please submit a one-page personal statement with your application.
How would you describe yourself as a human being? 
You have just completed your 300-page autobiography, please submit page 227.
Tell us about a challenge you have faced in your life and how you have overcome it. 


...Those were the types of college essays I needed to answer.... 


'Make yourself stand out!'
'Show the Admissions Officers something they can't otherwise get from the rest of your application!'
'Show them what makes you, you!'
'Show them your drive and where your motivation comes from!'

....and in the background, that was the noise I heard coming at me from all-sides. 

College Application Season.

In my opinion college applications is the intersection of an uncertain future and 17 or 18 years of a person's past. It's the cross-roads of a student's identity: who they were, who they are, and who they wish to become. And then somehow where all of that meets-up needs to be elegantly, coherently, and intelligently expressed on paper -- on about a thousand forms, typed up into 500-character essays, verbally expressed in interviews.... Needless to say that similarly to my other friends, as a senior in high school, I was incredibly overwhelmed by this entire process.
Did I want to put down on a million forms that I was a student with a physical disability? Did I want that to be the focus of all of my essays? Would it hurt my chances of getting admitted if I revealed I had a strange and injury-prone condition? Would schools hesitate to accept me because they feared liability? (Oh sure, I know what THEY say and what the laws say...but it's what they DON'T say...) Was I somehow 'copping out' because I didn't have to think too hard to "make myself stand out?" These and other questions careened through my head day in and day out. It seemed like everyday my parents and guidance counselor gave me a new pro or con to add to the already growing list of reasons:

To Reveal or Not to Reveal? 

  • First off - whether I wanted to admit it or not as a 17 year-old, my disability was a part of my identity. Even if it was a part of my identity I wanted and tried so hard to deny at the time. My strategy for 'attacking' the stack of college essays was to start with the broader essay questions first, the generic ones that were not about "the meaning of silence" or did not ask me to "share your thoughts on the generational gap.." And once I started on the more general essay questions about myself I began to see how my disability influenced the way I was raised, my perception of the world, my ability to self-motivate, and my stamina. After I came to this conclusion it occurred to me that leaving out this part of me (even if I didn't fully understand it yet..) would not be giving college admissions an honest and full representation of who I was as a student. 
  • Second - I understood that I did not need to feel 'guilty' for being able to write about something I was born with. It is something every college applicant does, or hopefully, realizes that s/he can do. At the risk of sounding like a broken record: we each have some 'obvious' trait (that we were born with or inherited) or experience that has somehow made its mark on us. The point isn't so much WHAT that 'thing' is so much as it is HOW you write about it and what it says about you. How can you connect this to your future interests? How has it affected your ability to learn or take on new challenges? In what ways has this changed your perception? How will this part of you add to a college community? 
  • Third - Continuing off of this second point, it also means that I realized writing about my disability does NOT have to be the sole focus of the essay. College Admissions officers are not interested in hearing about every medication you've ever needed to take, or all the different lab tests you've undergone, and every operation you've been through. It takes a lot of patience and honest-self-talk to plumb through what you want an admissions officer to learn from what you are sharing. It helps to choose one aspect of yourself and finding 2-3 areas of your future interests or your education to connect it to. Don't try to over-do it because you don't want it to sound forced or 'fake.'
  • Fourth - As odd and cliche as it may sound, this is your chance to turn something that may otherwise seem 'negative' and show how you have endured and persevered. This might be an 'old and re-used' route by many with a disability but you can't ever deny the value that there is in this message! So long as the essay doesn't completely 'milk' the situation and is well-balanced with other aspects of the student, this route can work when done well! 
In the end, for some colleges I chose to reveal my disability and wrote about it in the essay and for other schools I did not. This had no impact on my admissions status as I found out later on that spring of my senior year. 
The choice to share your disability with others is always up to you! So in the end you (and the help of your family, teachers, guidance counselors) should make the decision. I understand that not everyone is comfortable doing so or feels self-conscious about revealing something that might otherwise make them feel vulnerable. Whichever route you choose be sure that it's something you believe fully represents you and what you bring to the table! Other things to help the decision process: research what the school has in terms of disability resources, see if you can find out what accommodations would be available, and if it helps you can even go visit the school before writing the essay for them.

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Being a Disabled '20-Something' - So, What's It Like Now?

By | Published Monday, October 3, 2011

Most of what I have written so far have been stories from my childhood or general reflections. Since recently turning a year older though I think I am well enough into my 20's to be able to say 'something' about it. (But truth be told probably in a year I will read this entry and think... umm girl you were totes wrong!)

I should probably start by describing my friends I ended my teenage years and began my 20's with:

This crowd of incredible, inspiring, self-motivating, intelligent, caring, hysterical, talented, and compassionate hooligans are the folks I went to college with. And they are truly something. I know, at least I hope, we all have friends that we can say that about but I'm pretty confident that if YOU readers... from Australia, India, Nepal, South Africa, Japan, Taiwan, and every other corner of the world were to meet my friends, I am pretty sure you would hit it off with them too. They're just ridiculously great and I love each one of them for their nuances and quirks.
It wasn't until recently that I realized the group of friends I made in college are not your typical 20-somethings. Most 20-somethings are not all in grad school with a desire to help others, and to do so with an equal hand and knowledge of academia, compassion, and a sense of moral right. I think this has a lot to do with the college we went to -- a small school in Massachusetts that requires all of its graduates to hold an internship, and by the time we graduated .. let's just say that the words 'social justice' or 'race, class, and gender' were concepts, theories, and experiences all of us have a wealth of information to speak on. They are not afraid to be out of their comfort zones because we went to school with an expectation that you should be out of your comfort zone, we volunteered not because "it's something you should do for your resume" but because we were curious and interested about the larger issues in our volunteer experiences. They are go-getters to the max. I truly believe that nothing will stop my friends from achieving their futures because they proceed with a determination and certainty that "I am doing this because this will help me reach my future goals, and I care about what I am working towards."

These folks are also the people I shared my first drinks of alcohol with, told me what to do about boys, we helped each other through our first 'professional' experiences at 19 or 20, helped each other with our resumes, supported each other's student activities events, competed for leadership positions around campus, we stayed up all night downing jello shots and racing through papers... and the memories of "growing up" (let's be honest here, I still am) together could go on and on. Towards the end of school and as we each went our separate directions (AmeriCorps, PeaceCorps, grad school, fellowship programs, full-time teaching positions, etc.) we all reminded each other that we got to this point because as much as we like to have absurd amounts of fun (and do borderline questionable things ...ahem..that we vaguely remember the morning after), our work and what we are focused on achieving will always come first. And more importantly, we always continue support and help guide one another through this odd phase of our lives. This time in our lives where people expect us to "Enjoy being young! Live for the moment! What are you up to these days? Are you in school? Are you working? Plan your future and career wisely!" It can get confusing to say the least.

So.... uhhhh... back to the original topic of this entry. All of that is exactly what being a disabled 20-something has been like for me so far. Yes I still get stared at, and no I never know what to tell a guy I have just begun dating about "what my 'deal' is", and I'm still learning how to 'network' like a grown-up, and I am still learning when to say the words "Can I give you my business card?" (before or after the goodbye?), and I'm still learning whether or not it's appropriate to talk to my advisers/supervisors about "What did you do this weekend?", and I'm learning how to hold my own at meetings with the 'big-wigs,' and while all of that is happening I am forever trying to keep my family from worrying, and learning about what an accessible apartment really means, ... and on and on and on...

And that's just it isn't it? It just goes on and on and on. I don't have a magical 5 year plan that has been all laid out with bullet points and career objectives (okay, actually I do but it was REQUIRED...And I also learned that just because you have a plan DOES NOT mean you have to follow it!) The point is that being a disabled 20-something, for me, doesn't really seem all that different from being a 20-something in general. There are a thousand things that I am still learning and I am quickly finding that as I am getting older, I never get to choose what I want to learn, because things will happen before I know it and the event or moment will have passed -- and then I'll just be on to the next thing.. and the next and the next. I have options, will I learn it or will I let it pass? Because I'm such a nerd though I have a tendency to do the former of the two.

Will probably turn this into a blog button!


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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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Going away to College - Tips for the physically disabled

By | Published Saturday, July 23, 2011

This past week I wrote about my transition into independence and moving into my first dorm room. The post was published here on Thriving and I hope you got to check it out!

During that time period I remember scouring the internet for advice on dorm-living for the physically disabled. I have to admit that I wasn't too impressed with the results of my findings. While I told the story about the transition I didn't share tips that helped me along that process. With that in mind I figure I'd list a few helpful tips in today's post, so here we go (Note: These tips apply to anyone with a physical disability not just O.I.)

Questions to keep in mind:

  • When it snows is the campus plowed? (If you're able to it might not be a bad idea to visit some campuses during the winter)
  • Are all the dorms and classrooms accessible? If not what does the school do?
  • What hospitals is the school close to? Is there accessible public transportation to these hospitals? Does the school provide accessible transportation to these locations?
  • What is the school's medical emergency procedure? 
  • Where is the Office for Students with Disabilities? What services does this office provide?
  • How do I get in contact with the RA (whoever is in charge of the dorms 24/7) should there be an emergency?
  • What is the fire exit plan when elevators cannot be used? 
  • How can my PCA also have access to the dorm? 
  • Can my textbooks be delivered to my dorm so I don't need to carry them myself?
  • Are the desks and chairs able to accommodate wheelchairs in the classroom?
  • What medical notes/forms are needed in order for me to "register" as a disabled student on campus?
  • Is there a place I can store medical equipment other than in my dorm room? The school health services office? Campus security? 
  • Is there another wheelchair I can use on campus in the event that my own wheelchair breaks down? 
...Those are just a few questions that I remember asking. I am sure that there are plenty more but be sure that you make the time to flush out every possible scenario you can think of! This way you are prepared when visiting campus or meeting with a school administrator. Remember, it's always better to be safe than sorry.


Helpful things to pack:
  • Spare batteries/chargers: for hearing-aids or wheelchairs etc.
  • Twist-ties: there can be A LOT of wires in your dorm room from all those electronics & gadgets, twist ties are incredibly useful to keep all of them neat and away from your wheels!
  • Spare wheelchair and any screw drivers or allen wrenches in case something needs to be fixed quickly
  • Medical emergency bag: if you needed to be rushed to the hospital what would you absolutely need? Put all of that stuff into a bag that is always ready to go and easily accessible to anyone in your room
  • That claw grabber thingamajigger ... you know what I'm talking about? 
  • Wheelie containers: if possible try to get all of your storage boxes/drawers on wheels. This way it's easier for you to move them around when it comes time to re-organize your room or for you to get things
  • Definitely get a laundry hamper that is on wheels... we all know students love waiting until that basket gets ridiculously heavy before starting laundry!
  • A mini-fridge that's at an appropriate height. Personally I went with the 2x2/3 cubic foot fridge that also came with a mini freezer; I then put this on top of my drawers so I could reach it instead of leaving it on the floor

If my readers think of any other helpful questions or things to pack please be sure to leave suggestions in the comments section. It'd be awesome if this list became a resource for others who were getting ready for dorm life! 

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Thriving - in college & beyond

By | Published Thursday, July 21, 2011




Dear Readers,
As some of you know I have been treated at Children's Hospital, Boston since birth. Having grown up not too far from where it is located I believe that beyond the medicine the organization has had a huge impact on my development into an adult. So when I was given the opportunity to share how Children's helped me successfully transition into my first college dorm - I readily agreed!! It is my hope that this entry shows other kids and patients of Children's that not only is a college education attainable, but so is life-long independence despite complex day-to-day challenges we may face. 

You can find the entry HERE - at Thriving, the hospital's award-winning pediatric blog. Enjoy and thank you again for your continued encouragement & readership. 

- Sandy 

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Volunteering to Out-Prove My Disability?

By | Published Thursday, July 7, 2011

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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Fragile Clubbing

By | Published Tuesday, June 28, 2011

Every time I first head inside I get nervous. My eyes adjust from the dark evening outside to the dimly lit blacker interior. For the first few minutes I am taking advantage of the random flashes of light from cameras, the fluorescent glow from the bar, and spastic dazzle of lights above the dance floor. These are one of the few occasions when my friends have to plow a way through for me, because it's safer. After we all find a table to sit down the rest of me relaxes; at this point my heart has surrendered regulating a beat to the pounding bass the DJ is spinning. Yep, my friends have talked me into another night at a dance club.. 


I must admit that I am not a club person. I don't dance, don't listen to the latest tunes to know all the latest lyrics, don't actually like the taste of alcohol, and I'm rather gun-shy (contrary to popular opinion). All of that added to a crowd of squirming, grinding, jumping, pop lock'n'dropping five feet plus strangers probably leaves you wondering Sandy, why do you even bother going to these places? And how could I forget? Throw into the mix the brittle bones and I am sure that is all grounds for the FDA to make a Warning Label. And yet a few times a month I find myself returning.  Maybe it's out of my own ignorance? Idiocy? Because I enjoy flirting with risks? The only reason I know for sure is that each and every single time I go, I end up having a ridonkulously stupendous time!
Club Safely:
  • I have only ever gone with my closest group of friends. These are the people who know my comfort level the best and some of the people in my life I feel safest with! I believe that comfort level and safety are two of the most important things when venturing out into any totally uncertain environment that someone with O.I. should consider
  • It is these same friends who I credit with the fact that I have never fractured or had any other injury while out painting the town red!
  • This law is old but never falters: Drink Responsibly! Alcohol intake for someone with O.I. has a lot of different factors that 21+ individuals should be aware of (even if you don't choose to heed all of them). Just as with anyone else, know your body's limit, do your best to make safe judgment calls, and be sure to stay within a group of friends that you trust and know well
  • If possible, get a table or booth - ask someone who works at the club if this could possibly be arranged. This is helpful when you need a place to retreat back to and it makes socializing with others who may be much taller than you easier 
  • Make sure that the accessible bathroom at the club is in working order!
  • When others approach you about dancing with you or on you, just go with your gut instinct 

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Destination D.C. 1 of 2

By | Published Saturday, June 25, 2011

In a post 2 weeks ago I wrote about the time I "ran away" from home. If you missed that one you can read it here. Some of my readers wanted to know what my bus ride over to D.C. was like and so I share it below. 

In front of me was a guy who looked like a crash test dummy after a rear end car smash. The skin on his face seemed sealed to the back of the seat in front of him, a trickle of drool staked out a southward path across a terrain of ripped leather covering, and his limbs had been sent helter-skelter by the violent snore of a deep sleep.
“Welcome aboard ladies and jeyntlemen to Peeter Paan baas naambur eighteeen siixty seyven. My nem iiss RRRoger and I am driver for thee eev’ning. Let me go through sum rules of thee baas….” The accent that tried to cram an entire octave of sounds into each word said his name was anything but Roger. Oddly the foreign lilt settled my nerves a bit, it seemed conflicted with itself – struggling with what it should sound like and what it wanted to sound like. 
“…Now thees baas ees eequeepped with lavatory, but pleeease I beg of yoou ladies and gentlemen, pleeease yoose onlyyy for eemurgency! And reemembur to flush or we have major bad problem -”
“It’ll smell like stinky cheese!” Barged a voice from the back; every random group of people has one, that socially awkward and loud character. She was directly across the aisle from me.
“Whaaaat diid you say m’am?” Roger asked over the loudspeaker.
“I said it’ll smell like stinky cheese!” She blared again, as though she were talking to a group of unruly preteens ripe with B.O. from P.E. class. 
 She gnashed mercilessly away at pieces of caramel she had offered me hours before,
            “Hey!” Her voice had struck the odd ice-breaker less atmosphere a bit too harshly. I turned from the window, annoyed that someone disrupted my meticulous stare at South Station. I was trying to commit it to memory: every Roman column, and each window pane nearly erased by years of untamed congestion from Boston traffic; even that guy who stood outside selling pretzels from his cart, his skin as weather-worn as an old fisherman’s raincoat. The rounded structure was like a well-respected grandpa whose tough-love grumblings you longed for when gone. After merely twenty-minutes into the trip, I discovered I did.
            “D’ya wanna piece o’ caramel?” She held out a wrapper the same metallic gold as the Chinese wind chime that hung by our deck, the sight made my stomach ache. My eyes skittishly scanned the other passengers, no other heads turned. Why should they? We were only a group of strangers who happened to be traveling together. Clearly, the air we shared for the next fourteen hours was a pathetic microcosm in respect to our eventual destinations. Some of them I imagined were headed home; I figured those were the ones who wore tourist targeted Boston or Harvard hoodies. Others I imagined were running away, like that kid whose fingers found no comfort as they clutched at a pillow enshrined with Teenage Mutant-Ninja Turtles. I had hoped the kid would sit next to me.
            “No thanks” I replied coolly. I tried to hide the fact that I was obviously a ‘First-Time Passenger,’ as so embarrassingly engraved in red on my e-ticket. 
            “Fine, suit yourself” her voice humbled, as if she had been sure I would eagerly take the caramel. Perhaps if we had shared that mystifying realm of the ‘back of the bus’ for a couple more hours; maybe I would have taken the piece of candy.

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O.I.ndependence Away From Home 3/3

By | Published Tuesday, June 14, 2011

Continued from previous post

"No. No you can't. Absolutely not." 
"Why not?"
"What happens if you get hurt? Who is going to take care of you? What happens if you fall out of your chair and break something? What about your disability benefits? Do you know if they will still work out-of-state?" 
They paced and shuffled around my dorm room. My first mistake was having the conversation in a stuffy cement 6ft by 8ft block. I did what I usually did when they got frantic: Ignored them and looked away, stared out at the window and began counting the seconds till they calmed down.
"This is the best town in allll of America for you to go to college and you want to LEAVE? Are you crazy?! And not to mention you're right by the best hospital in allll of America too! With the best doctor! He knows you best!" Still, I remained silent.
It was like a very informal court case. I had to wait for their side to be done screeching their arguments before I could launch into mine. In my mind though I had all the answers to their questions, not only did I have all the answers but my responses screamed aloud in my head. I wanted to shake them by their shoulders and tell them that I was capable of so much more. That it would be okay. That I was sure, somewhere inside of me, that studying away was the next step for me. I knew their questions would not be about why are you choosing to do a study away program? (In truth, my parents didn't even really understand what my major was about anyway). But instead their questions were focused around do you think you'll be able to survive away?

"You guys, I'm going. I've already got it all planned out. I'm going." I could not have chosen to utter those words at a worse time. They were emptying my laundry hamper into a bag that seven days later would carry fresh clean clothes. Dad was putting boxes of pre-cooked meals in my room-sized refrigerator.
"You can't handle yourself on your own. You just can't. Who is going to do all of this for you?" 'This' is what my parents had been doing for the past 19 years.
Sure, my mom told me about how she gave up her job and career when I came along. And when my family moved to section 8 housing in a Boston suburb it was because we couldn't yet afford an accessible home to live in. I knew all of that stuff but it wasn't until that day that I saw how centered around ME my family was. Specifically, how centered around ME my parents' lives were.
I remember swallowing a very large gulp in my throat that day and at that moment. It made me incredibly sad to realize all of that - of course I was thankful and grateful for them but in that same realization I recognized I had something to prove for myself and them. So there I was wanting to get away, to show them not only was I capable of "..doing all of this.." for me - on my own, but that THEY had their own lives to live too. Their own potential outside of the lives of their children was unfulfilled, I saw it that day as my laundry was folded away into the drawers and food was put into the fridge for me. There are many times when I wonder where the world would be if every child could have had such adamant parents like my own.

The days following didn't get easier until after the long winter break was over. My parents still didn't realize that I was actually intent on leaving until they saw the boxes of things from my dorm my friend M had helped me to move back home. As I carried my bedding and sheets into the house the look on my dad's face was one of stunned sadness and shock. Somehow I knew that they wouldn't realize I could do "this" on my own until I was actually there on my own; knowing that helped me deal with their anxiety and the many arguments that occurred during that holiday season.

That night I was leaving for the bus station my parents finally came around (I mean, really, they had no choice by then). They gave me two large suitcases to pack all my stuff in and sent me on The Ride to South Station (earlier that semester I had saved all my work-study money to buy a one-way bus ticket to D.C.).
"So you're leaving home for the semester eh?" The van driver asked me.
"Yeah, I'm doing this US foreign policy program at a university in D.C. I'm really excited!"
"I remember when I left home for the first time, I had gone to the peace corps for two years and that was overseas..."

Study away/abroad/independence:

  • Know that it's possible. But also know that that possibility won't be handed to you, it'll take research, adaptations, and thousands of annoying logistics - but it will work. 
  • One part I had left out was that after talking to my parents I even wrote a letter to them explaining, calmly, my reasons for going and why I knew I would be able to handle it. To this day, it is probably the most honest piece of communication I have ever had with my family.
  • I always knew I wanted to try to live on my own  WHILE MY PARENTS WERE STILL ALIVE! Though they might be several states away, I knew that if something went awry at least they would still be there to help me. This may be blunt and a creepy thought to think about, but ... think about it!
  • Along the same lines of "know that it's possible," also know that others have done it before you. A simple google search of 'disability independent living' will reveal many sites and resources at your finger tips!
  • Also, if you are a student at a college/university - chances are there is a Disability Services Office at the ready to make your life easier. I was very fortunate to have an incredibly well connected office at my school and the woman in charge helped me from the start to the end of the my study away experience
  • For parents: your child seeking independence is natural, inevitable, and I hope it is a source of pride for you (I am not a parent so I have no clue..). And of course you will be worried (we expect you to be!) but as a child I also want nothing more than to know you always have my back, and that you will trust me to listen to what you are saying and go my own way. 
  • For young people: Your parents are totally gonna freak out. We will always be their "fragile babies" and I'm sure we have all heard the horror stories about the time "so-and-so had no clue about O.I..." But now it's not like that! Now it's our responsibility to educate and help others be aware of what O.I. is about, and more importantly, what we as individuals are about! Remember those times our parents talk about and use them for more than just amusing stories around the dinner table. 

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O.I.ndependence Away From Home 2/3

By | Published Monday, June 13, 2011

Continued from previous post

The days leading up to the night of my big announcement was a flurry of the longest days I have ever known. If I could take all the times I had been put under anesthesia then woken up in the recovery room, and lined them up from beginning to end.. for about a month and a half, that would be what those days were like. They were a blur of logistics, of waiting, of being patient, the pain and anxiety of not knowing specific details  I knew I was going to go to D.C., I knew that my parents didn't stand a chance at stopping me, I knew that I could do it, but I hadn't quite figured out all the pieces of HOW yet.

With the patience of my friends, my home school's Disability Services Office, my study away program's Disability Services Office, and the 18+ years of being raised by parents - I knew that things would fall into place. I'm not sure if they realize it today, but the biggest factor in my success of going away was how my parents had raised me.
Maybe it's because I am the middle child of two unaffected brothers, maybe it's because my O.I. is a mild-to-moderate form of the disease, maybe it's because my parents always knew I was capable - I'm not sure if I'll ever find out. But my parents always pushed me to "be exactly like everyone else." Everyone else in this case meaning all of those who were unaffected. I was expected to play sports, to participate in P.E., to put school work before anything else, to use my potential to its fullest before I even discovered it! Growing up I had witnessed countless moments of what, back then, had seemed embarrassing times when my mother would exchange "critical words" with school officials. "Sandy should not this..." and "Why have you put my child in that?!" or "I am the parent and I know her best, she doesn't need this..." there were plenty of "Why have you denied Sandy this?" and even more "You guys are not doing enough for her.." When I was six, eleven, fifteen, these incidents were horrifying for me to witness. I wanted to sink into the gel seat of my wheelchair and never surface again. At the time my innocence felt that BY ARGUING FOR my rights, and for an equal playing field, my parents were only highlighting my differences. That they were only making me stick out like a sore thumb even more!

It wasn't until that moment when I had found something I wanted to do more than anything in the world that I realized what my parents had felt; by that time I was a little more than 10 years older than when I had wanted to hide under the bed every time my mom's broken-English stumbled out of her mouth. So it was out of admiration, awe, and endless gratitude that I began to send emails, made phone calls, held meetings, and made all the necessary connections on my own. This was the most important. I wanted to do ALL of the research, back-work, make all the connections on my own - or at least without the help of my parents. I knew that if I could show them I was capable of doing that much their argument against my leaving would be moot.

There were countless meetings with my home school's Disability Services Office, then hundreds of other follow-up emails with the office at my study away school. Hours of research was spent on navigating D.C.'s metro system, even more time was taken to ensure I would have access to a wheelchair company in case something broke down. I met with my orthopedic and got checked out to make sure that I was "okay" to leave. My doctor at Children's gave me the name of a colleague at a hospital in D.C. who was knowledgeable of O.I. I had to ask thousands of questions about the accessibility of the dorms and campus: would the campus be plowed? What happens if I get stuck in a snowbank? How would I get to the hospital in the case of an emergency? These and many other questions were added to a list that easily became longer than my own 3ft self. How did I think of these questions? Easy: I pretended to think like my parents.
I literally would spend hours alone in my dorm room trying to think of all the possible scenarios that might happen to me in D.C. and consider what my parents would throw out there. As the days when by the questions were either answered, or they were crossed off the list as a "non-issue."

Finally, that day when I would tell them I was leaving arrived.

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O.I.ndependence Away From Home 1/3

By | Published Sunday, June 12, 2011

It was quite the process getting my parents to let me live in the college dorm. A dorm that was only about 25-30min away from home. What would happen if you got hurt? Who would take you to the hospital? Does the school know what they're doing? Who is going to help you when you have a cast on? Everything is already accessible at home - why do you want to make it harder for yourself by moving out? These and other questions was the uphill battle I fought during my senior year of high school, all the way up to the day I moved into my dorm. As an 18 year-old I was furious with my parents for wanting to keep me at home. In my opinion they should be proud that I wanted to leave the house, that I wanted to seek my own independence, that I felt ready to try living on my own. Didn't they realize that the reason I felt ready was because of the way they had raised me? Shouldn't they be flattered? But no, they wanted to keep me home. To keep me safe. To keep me secure. To keep, for the SHORT term, life easy for me. It was during this period of my life that I began to realize that it isn't ALWAYS that teenagers make decisions in our lives for the short term; I decided I had to be the parent to my parents and show them that it was time for me to go, no matter how difficult and challenging "The World Out There" may seem.


So after two and a half years of getting used to living in the dorms at a college near by I started getting itchy again. I wanted to do what many college students in America and my friends were experiencing: study away/abroad. As a Global Studies/International Relations major in college going to school in Boston I envied the college students who were studying in D.C. My first passion (aside from writing) is in human rights, international law, child rights, NGO-work, the work of the UN, etc. D.C. was the closest I could get to all of that activity and more. 

When I made the decision for myself to go study away in D.C. I was simultaneously happy and sick with anxiety. I remembered how much of a struggle it was to get my parents to let me live 30 min away from home, I couldn't imagine what their response would be like if I announced "I want to live several states away for 4 months. I'm going to do it, I'm a legal adult now and there's nothing you can do to stop me." Literally, the night before I was to make the big announcement (after applying for the program behind their backs, and getting accepted, and not being able to share my acceptance with them on the spot..) I threw up because I was so nervous and anxious. 

This blog post "O.I.ndependence" will be several posts long. I will have advice on study away/abroad programs (and other independent living tips) listed in the last post of this series. 

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