Showing posts with label wheelchair traveling. Show all posts

Okay. So maybe this post isn't about the time I trekked across a river and through the woods, but sometimes what should be a regular outing for an errand can feel like I just went cross country skiing. This is especially true in the winter when piles of snow is all anyone can see.


Senior year of college my friend A and I were serving as interns at a non-profit, whiling away the time before we graduated. Now, as anyone who was a college student in the New England area knows - "spring semester" is a misnomer. There is about 2 months of spring during that 'spring semester' and the rest of it is usually smeared with frozen slush of varying shades of brown, white, and gray.
I feel like I could say this about most winters in Massachusetts, but that winter there had been a blizzard of EPIC proportions. Still, A and I trekked through the snow to get to our internship site - it was about a 10 min walk from the main campus, and then followed by a 25 min bus ride into town. Let it be known that had A not been with me I probably never would have tried to go in alone.

Thinking back on it now only bits and pieces of the scene can be thawed from memory. All I know was that it was there was a down pour and everything was covered in sleet, or humongous puddles of barf-like snow. I'm not sure why we didn't call a cab that night as we left the office, or why I didn't think to just call the college security officer to come get us - maybe we were just brazen and bold.... more like foolish and stubborn..

"Oh geezus it's a shit show out here.." Shortly after leaving the front entrance of the office my wheelchair began to slide effortlessly towards the curb. I tried desperately to slam on the joy stick and get it to turn away, but I could feel and hear the wheels turning uselessly beneath me.
"Ummm I think I need help?" I looked back and saw that A was trying to make his way around what looked like moon craters "Yeah.. uhh hang on a second, I'm coming!" 


After what seemed like an eternity we made it to the bus stop. We sat silently on the rest of the way back to campus, maybe we were both silently wishing that the rain would let up once we got out - or that one of us would come up with a brilliant plan. Sadly, when the bus reached our stop neither of those things had happened.
None of the side walks had been properly cleared or even attempted to be cleared of the icy slush. I often found myself tail spinning into snow banks or finding myself ankle deep in curb cuts that had been drowned in snow, my foot rests buried somewhere in the pile. To say that it was a mess would have been an understatement. But A was incredibly kind and patient, though I felt terrible that he kept having to turn around and drag me out of yet another snowbank. His pants were completely soaked from the frozen puddles,
"Dude, need I remind you that we're not even getting paid to go to this internship. But we definitely should have been paid to get through this disaster!" 
"When I get back to my dorm I am jumping into a hot shower. I am pretty sure my ass is frozen to the seat." I muttered, angrily slamming on the joystick again as I felt myself swivel uncertainly up a curb cut.

Many of the cloudy puddles hid the various crevices and ditches in the road. Although I am usually good about remembering the terrain and where there were sudden drops or bumps, that night I was desperate to just get INSIDE and didn't care to remember where THAT gaping hole in the sidewalk was. Which meant I often felt myself flying through mid air and then landing hard on my rear, but like I had said - every part of my body was so completely frozen at that point, it was like I was wearing a poorly insulated body cast. I felt nothing!
At long last we saw the campus in our view. A and I parted ways as he went back to his own apartment and I rushed inside of my dorm. I don't remember ever feeling so frustrated by how slowly my body seemed to move despite how quickly I wanted to be warm. All of my joints ached, my fingers and knuckles felt like mangled pipe cleaners. My legs seemed frozen into place, and I imagined that somehow my bottom half had turned into a statue - my knees did not feel like they would ever unbend themselves to save my life. Everything felt like they were permanently stuck or on the verge of fracturing. I had no idea what was going on! The dorm shower allowed my chair to be driven in and somehow I managed to crank the shower control allll the way over to the H side.

After that incident, you can be sure that I now better plan my travels when there is another snow event that seems like the apocalypse has arrived! Oh college, the things that we learn!

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!

*The name of the door-to-door van service has been changed for legal reasons.

Boston, where I grew up, is one of the oldest cities in the country. The city's historical cobble stoned sidewalks combined with its College Town reputation makes for an interesting dynamic. Beantown's subway system (metro) is the oldest in the country, but even without it you could easily stroll from one end of the city to the other. Each of the different neighborhoods of Boston has its own flavoring, own historical distinctions, and most prevalent are its own college students. It seems that wherever you are in town you're never far from stepping onto a college campus!

Actual sign at a Boston station!

A favorite place for a stroll

I realize that all of this might seem like I am staring at the ground a lot when I am traveling. But I promise I'm not. I don't travel with a magnifying glass as I roll through the city, like some old fashioned sleuth - I'm not that awkward. Growing up on the East coast means that I am also an old hand when it comes to traveling in eight or more inches of unforgiving snow, ice, and slush. THAT stuff makes it impossible to know what lies beneath their crude snowy surfaces, so really I can't always be looking on the ground - it doesn't always do me any good. (By the way, traveling in snow & winter will be for a completely separate future post. But it's the middle of July and I don't want to be depressed just yet...) If you were to ever see me cruising around the city it's kind of a mix of looking ahead, around, above, and below. Simply put it all of this forces me to be more aware; I've learned that there are far more than just roses waiting to be smelled along the way. 

For 2 weeks I went to Hong Kong & Macau with my family. In this first entry I write about the logistical accessibility issues of my experience. In tomorrow's entry I will cover the interpersonal accessibility issues and what it felt like to be visibly disabled in Asia! At the end of tomorrow's post I will include my usual list of tips if anyone is interested in international traveling. 


"You should be thankful that you were born in America."

Fast forward 18 years later:

"You're really not missing out on much, it's just a big glass tube that goes all the way down. You can see the same things from down here." 
The rest of my friends had raced up the spiral staircase that wrapped around an enormous see-through tube at the New England aquarium. We were all on a sixth-grade field trip and for some reason or other the elevator wasn't working, or things were still under construction. I can't remember the reason but the point was that what should have been accessible to me was not.

For many of us who use wheelchairs this is a daily life occurrence. Now that I am older I recognize that I need to take the initiative to figure out whether a place or an event is accessible or not. This can be as simple as looking up a location on Yelp.com or calling ahead of time to make sure that all elevators etc are in working order. As a city dweller I have found that researching in advance is particularly helpful when traveling on public transportation. Looking things up to make sure that all elevators are in working order or what alternative travel routes may be can save hours of hassle later on; though I will say that it is slightly inconvenient that I am not able to just head out the door and know with 98% certainty that I will be able to get to my destination without any major loops.

As a young child I was usually with an adult who would be able to carry me or help to lift my wheelchair up a few steps, or over a curb cut. Since I went to school in a suburb of Boston, growing up we had numerous field trips of the historical sites around the city - as you could probably assume many of those sites were back in the days of colonial and revolutionary times. Cobble stone walkways, historical buildings unable to be renovated, old foot bridges, nature walks, battle fields, forts, or old ships were some of the frequent attractions that our class would troop through. I would dread filling out the work-sheets as I stayed behind or had to go alllll the way around and through some ridiculous entrance to get to where everyone else was. Other times I would just stay put and not even attempt to roll through a colonial house that had a doorway that looked like it was about to collapse.

Now that I'm older I can still have someone carry me into a building or lift my wheelchair it's just... a little.. silly. Okay, a lot silly, in my opinion. Recently I met someone who does panorama shots of different locations - one of which happened to be one of my favorite places in all of Boston: The Boston Public Library. My grandparents worked there for decades and I had grown up in their home. I remember my parents would set me down on the floor of the children's room and let me crawl around pulling books off the shelves, but I had never seen what is known as the 'old entrance' to the library due to the marble staircases. At least not until almost two decades later when I came across the panorama on the website here.
Finally! I could see the entrance of the building that had allowed me into so many other worlds and the lives of characters both real and fiction. To be able to see that as an adult after the tremendous impact the library had on me as a child was almost shocking; I was in awe of technology, the skills of the photographer, and the full circle that viewing the images brought me. All the memories slammed into me like waves and days after I first found the image I found myself returning to poke around it again. (What's neat about the panoramas is that viewers can click around the image as if they were standing at the location themselves). And that's when an idea struck me -
I want(ed) every place that wasn't accessible to have panoramic views available to visitors! Though this will certainly take awhile and not every location will allow pictures to be taken, it's an idea and I believe one that is feasible. I have long since overcome the anger and resentment I used to hold towards historical sites that were not accessible, it's still disappointing and a bummer but in an odd way I have great hope, curiosity, and excitement for the boundary that these places set up in front of me. It's not so much a wall that keeps me out so much as I recognize it as a technique for preservation, it's a mystery that I have respect for because I am unable to experience it... yet.

Accessing inaccessibility:

• Research in advance and plan ahead,  this usually involves contacting locations
• Sometimes you will have to ask ahead of time for a map or a tour that includes all the accessible routes/entrances
• Some events are not always safe for someone with O.I. (i.e. public pillow fights) but letting event coordinators know in advance can allow necessary precautions to be taken to allow maximum participation
• Many concerts will have special wheelchair seating locations already marked out, these areas also allow individuals to bring friends with them as well
• If the wheelchair is a school-aged child, having a buddy or a close friend go with him or her through accessible entrances/routes will help kids to feel less isolated
• If possible, travel to new places and locations where you are uncertain of accessibility with a family or friend
• Sometimes you will have to be innovative and make the place accessible yourself! I have gone to buy a plank of wood from Home Depot to create a ramp at friends' houses, or sat in office chairs with wheels, been pulled in wagons etc. 

My friend from college describes it perfectly: "It's like Moses parting the Red Sea." For those of us who use wheelchairs we appreciate the automatic path that opens up before us. It's a bubble of space that opens up for us, out of fear? Out of politeness? For the sake of saving their own toes? Whatever the reason may be, as someone with brittle bones, I like it. A lot.

When I am in my manual wheelchair my reflexes need to be cat-like. One hand needs to be ready to push forward on one wheel and then pull back on the other wheel for a quick dodge. Or if someone gets too close I might rear back on my hind wheels like a surprised horse (also known as popping a wheelie!) The whole time I'm navigating I am also spotting - psshh yeah right, not spotting for toes that get in my way, actually I am spotting for pockets of air, for open scenery, for an open space! And when I see one I will dart to it while glancing around to make sure no one else has spotted that space, and then the crowd will converge again and the process repeats itself. By now the motions are as familiar to me as untangling headphone wires. I know just how much to push or pull and where and when to be able to settle for two seconds of peaceful space. These moments of quick activity are one of the few times I actually,  I dare say, feel graceful and elegant with my disability.
Kids and adults with O.I have grown used to being automatically protective of themselves. It has become more than just instinct for me. When someone becomes too close too quickly I have already seen the part of me that they will collide with, what bone will break, and even a slight hint of what it might feel like. I imagine it's kind of like if anyone else were to remember that horrible taste in their mouth after that particular something they ate years ago. It's in part because of how protective my parents were of me as a young child, but it's also in part out of my own fear. We just don't want to get hurt again!

Then when I turned 10 and was in the 5th grade I got my first electric wheelchair. That was the moment everything began, that was when the gun for the race between Sandy and The Rest of The World went off. Diving in and out of crowds in my power wheelchair is A BLAST. Ask anyone who knows me or has seen me, it's like I am playing a game of Nintendo Wii every time I am in a crowd. I am grinning as I spot an open space and when I glance out from the corner of my eye I see someone quickly approaching, I press forward on the joystick a bit more and challenge myself to time it right: for me to get to that open space first. When I am leaving Fenway Park or any other event, friends I am with always follow behind me. "Sandy will clear the way.." is the usual agreement and I just, literally, plow ahead. It's fun, it's dangerous, and if my parents could ever know what I was up to...(well, we won't go there).
My skills at xtreme wheelchair crowd diving began in middle school. Then I perfected it during the four years of high school everyday during the 3 min of passing time between classes. There is nothing like dodging mountainous backpacks mounted on the shoulders of giant 14 to 17 year olds. It's not just the wheelchair that needs to move, but my shoulders, neck, and head need to dodge on time as well. Then in college the challenge was raised when I would head to clubs packed with people twisting their bodies to the music, the lights dimmed or in some cases completely off.

I say it's an xtreme sport because I'm never satisfied with that same bubble of open space for long. Sometimes the crowd will head towards my direction and it's time for another dart elsewhere, but most times it's because I have spotted another open space and enjoy the challenge of racing ahead to it. The unknown repetition of this motion keeps my days of sitting at right angles for 7+ hours interesting and even fun.

Xtreme Crowd Diving:

• I am not saying that everyone with O.I should necessarily pursue this "sport" but please know that if you DO decide to try this, practice at a mall or a place with large open areas and ALWAYS be sure to be seat belted in!
• If you accidentally run over someone's shoe or toe, please own up to it. Say "sorry" or make sure that the person is okay. You would want the same thing for you if you got hurt. 
• When in a crowd and NO space is opening up, I have tapped people on their backs to and they have always moved aside. Most times no one hears when I say "Excuse me"
• Use your best judgment, be safe first
• I rarely, in fact I never pursue crowds alone. I am either with family or friends - this has helped on many occasions especially if I am accidentally bumped into or injured.  
• When someone steps aside for you be sure to say "thanks!" If a person brusquely walks ahead of you/pushes you aside it can be interpreted as a rude gesture. Try not to be rude and always nod in acknowledgement or say thanks when someone has allowed you more space

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. 

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.

It could be to your friend, flight attendant, bus driver, or even a family member - but we've all done it, and done it MANY times: Explain how to fold the wheelchair. I have had manual wheelchairs that stay rigid and don't fold, wheelchairs that fold, and have even seen electric wheelchairs that collapse. It's a part of our lives and while we do it as automatically as someone else ties their shoes, to explain it to someone else can sometimes require the patience when teaching a 5 year old how to tie shoes for the first time.

This post won't go over specific details of how to collapse any wheelchair but instead give tips on giving directions to otherwise "clueless" folks who might not know the handlebars from the brakes.

Giving directions for medical equipment:

• A few times I have been out with friends and needed a ride home late in the evening. Giving directions to someone who hasn't folded a wheelchair before, and never mind in the dark, can be quite the hassle. If this happens it might help to turn on all the lights on in the car and try to position the wheelchair as close to the passenger seat as possible so that everyone can see what they are doing!
• Be patient. The individual is probably nervous about making sure s/he doesn't break anything and is probably aware of how expensive the piece of equipment is. 
• Think about it from their perspective! Imagine you are the one standing over the wheelchair and tell the directions from that point of view "so to your left there will be a switch that kind of looks like a fishing hook..." as opposed to "look for the switch, it's somewhere no the left."
• I have always found it helpful that my friends and family first make sure the seat belt is untangled from the wheelchair frame. Safety is key and should always be your first consideration!
• Take into consideration the size of the car or trunk that the wheelchair will be placed in. If necessary, do some planning in advance. Sometimes I have needed to take the foot pedals off of my wheelchair or with other trunks the tires have had to be popped off. 
• Don't use language from the instructions manual. Not everyone may understand the jargon from a manual so use language that is easily accessible and quickly understood - especially if you are writing directions for a flight attendant. Words like "seat is velcro and can be detached" as opposed to "remove adhesive from seat to collapse frame." 
• After you are placed into the wheelchair make sure everything "feels" right. It's important that wheels are not suddenly loose, or that the seat isn't securely fastened in. If something seems awry just calmly help the person figure out what seems to be amiss, but do so from a safe place! Fixing a loose tire while you're in the chair might not be the greatest idea. 

That's me, riding on the back of a jet ski on Lake Mousam in Maine.

• Get a medical bracelet that says Osteogenesis Imperfecta “brittle bones” disease on it
• If you’re flying, call the airline in advance to make sure that your wheelchair or other medical devices fit their requirements. (Airlines have alley chairs to transport disabled people to and from the seat to the gate).
• One of the best ways for people with OI to exercise is by swimming! Water parks, hotels with pools, amusement parks with water rides, and beaches can be enjoyed by everyone in the family. (Ask your doctor about water proof casts in the case that you have a fracture).
• It’s safest to take your most reliable wheelchair to travels. Experiencing wheelchair malfunctions or breakdowns can be risky when you are far from home and or your health care provider.
• If necessary, call the hotel/motel and ask about accessible bathrooms and poolside assistance