Showing posts with label wheelchair access. Show all posts

School had been miserable, the professor had asked me to repeat myself only about a hundred times. In actuality it was probably only a handful of times, but in a lecture hall of at least 50 students - it seemed like I was stabbing myself in the eye 1,000 times.
"I can't hear you, can you speak louder?" The old instructor leaned over and squinted at me. I took a deep breath in and prepared myself to begin again... and then...once more. My classmates shifted uncomfortably around me, it was awkward for everyone involved. Even, I imagined, painful for the fly on the wall that buzzed around the projector.
But time moves on, class was soon over and I stormed out.
"Sandy, maybe you should ask to be able to speak into his microphone or something, next time." A friend suggested quietly, sensing that I was secretly fuming and my ears ready to burn off my head. Just listening to that thought in my head made my stomach lurch. I am one of those people that gets freaked out when I hear my voice echoing over speakerphone, or Skype. I could not fathom the prospect of having my voice be projected into an auditorium. I shrugged my shoulders, "yeah maybe."

On my way to work I was slapped in the face by a swinging backpack on the subway, took a longer-than-necessary elevator ride in a tin box that reeked of urine, and felt largely unprepared for a telephone conference call. It was one of those days when I knew I had a list of things to do, and would only have enough time allotted to talk about the things I needed to do. Meetings, I have yet to go to a meeting where anything was ever actually done! I grumpily thought to myself.
Work flew by, I added a few more "things to do" on my list, and left the office. Slightly paranoid that I was becoming one of those people who takes work home.

The van picked me up, and the driver let me know that he would have to pick-up another passenger as well - drop her off first, and then me. I shrugged and said it was fine. I stuffed my ears with headphones and promptly zoned out. At long last we dropped the other passenger off at her house and turned to head towards home. The sun had now set, the sky a deep blue and I realized sadly that soon it would look this way a lot earlier on in the day. At that point I just wanted to get home, I wanted to stretch out all the 90 degree angles my body had absorbed since 7 that morning, I wanted to get lost in some marvelous made-up fiction novel, I wanted to be in a place surrounded by the familiar.
We finally pulled into the driveway and I turned my wheelchair on before the tie-downs had been taken off. I wanted out!
The lift unfolded, croaking and groaning as it did. I thought nothing of it and zoomed quickly out onto the lift, the driver put up his hand to stop me from going over. I was a mere 4ft off the ground, 4ft from touching home-ground. It stopped. He flicked the on and off switch a few times, there was a silence and lack of movement that made me wish a sinkhole would open up underneath all of us.

Ten minutes later it was concluded that the lift had indeed stopped working, and I had been transferred into my manual chair.
We talked through several possibilities, and while I pushed to have the fire department come and lift the wheelchair out - he was adamant on not calling emergency services.
"This isn't an emergency..it's just the lift."
"IT IS NOT *JUST* THE LIFT! THIS IS AN EMERGENCY BECAUSE THIS IS MY CHAIR!" 

"M'am there's no need to get frustrated. I can get the lift fixed tomorrow morning, and we can drop your chair back off to you." 
"So I have to rearrange my schedule because you decide when my chair will be free for me to use? No. The purpose of the chair is for me to get around and go where I need to go. This is crap." 
I began to think that everything in the world that could possibly be wrong with me, actually *was* wrong with me. My pip-squeaky voice was not capable of anything worth hearing. People would always blindly bump into me in public transportation. Elevators will always reek of urine because, apparently, public accommodations are meant to be pissed on. Work is an utter disaster. And now I can't even choose when I get to access my own wheelchair. I gave up. I stopped trying and called it a day. I went in my room and read until I fell asleep in my jeans.

The next day my wheelchair was returned to me, later on in the afternoon. The lift had still not been fixed. I watched in horror as two average sized men heaved my 200lb electric wheelchair out of the side door, and proceeded to scratch up the sides, and cracked the shroud. At that point I had already missed half of my day and was anxious to get going. I spoke to neither of the men, got into my wheelchair and left to go about my day.
During my lunch hour I had calmed down enough to hop on the phone and file a complaint:
"Hi, I know that what happened yesterday wasn't really anyone's fault. But the driver did not handle it in a way that I felt respected my wheelchair or property..." 

The point of this story is that we will all have incredibly shit-tastic days. It is easy to think that everything bad that happened that day could have easily been avoided if I just weren't disabled. How easy would that be? How carefree and trouble free would my days be then? But the thing is, I wouldn't trade a shitty day on wheels for a lifetime spent wondering "how much better would it be.."

It goes without saying that my wheelchair is a mobility aide. If we don't want to be all hoity-toity sounding, it is at its most basic - a chair on four wheels that I use to get around in. But once we stick a person into that seat, and we bring that person out and about into society or the 'real world'...well... it becomes a lot more than just that. The wheelchair becomes a piece of equipment that has allowed me to cut-lines, sit in the front row, use the biggest bathroom stall, get VIP seating, board planes first, have reserved parking spaces, get free drinks, free rides, free..lots of other stuff etc. etc. 70% of the time I don't ever have to ask to get those 'perks,' they just come when I enter a given situation. The other 30% of the time? That's when I have to do a bit of decision-making. I thought I'd share three of my own considerations I think about before I decide to roll on ahead with that pass:

1. Could I be safer? 
Sure there are ADA requirements and all of that - but those don't always take into consideration the individual safety of each person with a disability, and his/her unique disability. What's safe for someone who is blind may not be safe for someone who has brittle bones! Take for instance I am at a club with my friends: it's dark, loud, there are lots of people and all kinds of movement -- chances that I will request a booth or table (away from the middle of the dance floor) where we can safely sit and gab are likely. Is it absolutely necessary? Not really, but I do prefer it so that I may safely enjoy the rest of the night.

2. Am I putting in excessive effort?
We - wheelchair users - already know all about adapting, accommodating, and finding alternatives. We know it like our lungs know how to inflate with air. I think that many who are not wheelchair users may assume that the initial effort we put in to adapt already seems like excessive effort on our part. But it's usually not; however, when we find ourselves pulling a neck muscle to see a concert, performing Cirque Du Soleil-esque acrobatics atop wheelchairs, or trekking up a side of a mountain riddled with jutting tree roots - it's safe to say that hurtling past those measures would be excessive effort. The point is that only you can possibly know how much is too much. And when we get to that point, maybe that's when we ask someone else if there's a more efficient and feasible alternative.

3. What would they think?
Ugh. I'm almost disappointed in myself for including this last question on this list, but the truth is the truth - and I have to own up to this one. I am trying to be better about this ...but when I do 'use the wheelchair card' I get incredibly self-conscious about what others around me are thinking. I hope that they are not thinking oh there she goes again, getting her way cuz she's disabled. There have been days when I decide no, I don't want to seem like I'm wussing out - I'll just suck it up and deal even though there could be an 'easier' way for me. And then other days I am able to talk down to it and think: judge me, I dare you to say something to my face - because at the end of this experience I will have left with awesomeness and you will have left with nothing but a mound of wrong assumptions. 

This last one is a decision that I find myself making the most when it comes to "the wheelchair card." But like all the other considerations above, these are considerations I practice weighing in my head everyday - hoping that some day I'll get a little better at reaching a solution each time.

I'm no mechanic and can just barely name all the parts of my wheelchair, so I don't know about the inner workings or the deep dark secrets of elevators. However I have ridden in many to be able to confidently offer up a few truths about those boxy transports --

• No matter how frantically you push the button, it's not coming any faster. Seriously. I've tried tapping out "faster" in morse code and it hasn't worked. Just wait. And if it seems an uncomfortably long time has passed and you're still inside? Then open the "Emergency Call" compartment inside and follow the directions...and...well, may the elevator gods be on your side! 
• It is going to smell like people. All kinds of people. Sometimes it may smell like people in various stages of undress. People are awkward, so the smell is going to be awkward. These are the things I tell myself so that I don't need to fill in the blanks in too many specific details. 
• If there is a small child, let him or her push the button. Otherwise you will be glared at by both child and parent for the remainder of the 15 second ride. It's uncomfortable already, so do yourself a favor and forego the small joy of pushing the light-up button when there's a young'un in your presence. 
• Sometimes the entire box will come to a shuddering halt. Spell your entire first name backwards and forwards before deciding to push the emergency button. On your lucky days the doors will open before you've finished your name backwards. 
• Try to not touch the railings, or suspicious wet spots on the elevator floor.. y'know what? Just keep your hands to yourself unless you're pushing a button. If the elevator were a circular plate, it'd look like a giant petri dish festering with germs. 

It didn't really occur me to that it was "a big deal" until I started Kindergarten. At home it wasn't a big deal because I was accepted, and expected to crawl around on the floor or use my wheelchair. And in pre-school it wasn't a big deal because most of the other kids were in wheelchairs or used other mobility aides too.
The difference was apparent on that first day of school in Kindergarten when I noticed that this wasn't really the way things were supposed to be. More specifically, you weren't the way things were meant to be. It took a class filled with other screaming, singing, running, jumping, squirming, nose-picking, and jacket-struggling kids to make me realize: the two appendages below my hips were not the norm. And even more so, there was nothing I could do to get you to work the way you're supposed to.

Around that time I began learning how to walk. With the help of my parents or physical therapists I'd strap you into clunky leg braces, and like monkey-see monkey-do I'd try to mimic what I saw everyone else doing. I could tell that you didn't like it, and to be honest most of the time I didn't really like it at first either. In fact most of the time - during those early stages, I felt like the puppet master and you were my marionette dolls. Except mom and dad had already told me that my puppet would never come to life, it wasn't going to be like in Pinocchio when he springs to life. So I labored on because that's what the adults in our world said we had to do. I continued to learn which strings to pull, I learned until over the years we came to be as close to "Pinocchio-like" as we could. It took a lot of frustrating moments, lots of tantrums thrown, hundreds of sneakers, many more leg braces, fractures, and corrective surgeries before we got to a comfortable place - but the point is we got there together: now, unlike my four year-old self, I know that you do work the way you're supposed to.

I hope you know that I don't mean to hurt your feelings when I say things like "I'd rather break my legs than my arms." But it's the truth. And I hope you realize that even though my wheels have more or less replaced you these days, I don't ever take your presence for granted. The hundreds of fractures we've been through together have taught me more about rehab and healing than what most people learn in an entire lifetime. You're my silent option, my quiet reminder of hard work, of staying humble, of being appreciative, of persistence, of there always being an alternative way. 


At the airport you're the reason for the scan, for National Security to sound the alarms - and then everyone settles down when they realize you're just a harmless reminder that everything is not as it seems. "Just metal from the rods and screws in my legs.." And when my brothers began cracking their toes, you're the reason that told me that I can try too - successfully. In public bathrooms you're the reason why I can stand on the footplate of my chair, or else I'd never be tall enough to reach the sinks. When we're at the mall, you're far too tempting to not want to visit the shoe sale. Your quiet insistence that each pair of shoes I buy is a long-term if not life-long investment usually wins me over. In middle school you helped me grow tougher skin when kids pointed at the snaking scar tissue that traveled down the front of your face. Let's not forget about the Mickey Mouse roller-skates we risked our neck putting on. Or the victory we felt when we talked mom into letting us onto the ice rink!

Sometimes sitting on the sidelines while my friends ran laps in P.E. class made me feel guilty about you. There they were being tortured and hollered at "DON'T CUT THOSE CORNERS!" While we were just chilling in the shade, helping out by writing down times each time they ran past me. It was moments like those where you seemed to get heavy with guilt too, with a feeling of uselessness that I hated and resented you for harboring. Settling for second best is something you taught me how to do with grace, and only when no other choice is available. With that said you also taught me that giving up, no matter how bad or hopeless things look - is simply never an option. You might not be able to carry me around in life, but in too many more ways you're able to carry me through a lot!

...Needless to say, you and I - we've been through quite a bit. And there's no doubt in my mind that I would never trade any of those adventures together for a pair of legs-that-work! You're worth my time, attention, effort, sweat, and worry. Please don't walk out on me, okay? 

• Monday: A letter of appreciation to my wheelchair. 
• Tuesday: Happy Valentine's Day! 5 Tips to ensure you're taking care of YOU! 
• Wednesday: Hope is the thing with feathers... and other observations of hope
• Thursday: Coming back from an injury can feel like starting all over again. Don't give-up
• FractureFreeFriday: This week's question I answered was "is it difficult being the only one?"

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!

Roughly 80% of the time I am in my wheelchair. Whether it's my manual or power wheelchair I have immense appreciation for flat terrain, ramps, curb cuts, and low door thresholds. But of course this is not the reality of our world. I think it was around the time I was in the third grade that I began to mentally 'unfold' stairs in my head. Around that time it was a "cool" thing for the girls in my class to fold paper fans that we would then decorate and trade. As I folded my paper fans I used to wish that stairs, in the real world, could be just as easily collapsible and flattened.

But as a teenager and young person I began going to my friend's houses and around town on my own. Encountering stairs are inevitable, especially that ONE stair step in front of that ONE store you have to get into. What to do?!

Here are the 3 ways I have conquered stairs:


1. Climb up them. 
The first house I lived in had 1 flight of stairs. It was there, in the safety of my own home (and around the watchful eyes of my parents), that I perfected my technique for the climb-crawl. For each person this technique is going to be different. The one tip that I would stress is that if the stairs have carpet pads -- MAKE SURE those are securely fastened to the step themselves. There were a few times when those carpet pads came loose and I had a few close calls of what COULD have been an incredibly painful fall.

2. Tell THEM to come down. 
Around the time of middle school is when parents stop hovering around when their children have friends over. Whenever I went over to my friend's house my mom or dad would carry me to the front door. My friend's mom would answer the door, "Hey everyone!! Sandy is here!!!" She would holler up the stairs and a mad stampede of feet would come running down. This was never something that I had to explain to my friends, it was just understood that when Sandy is over we should all hang out downstairs.

3. Ask them to accommodate. 
There is a street in Boston that is notorious for its trendy shopping and eateries. Most of the stores are in brownstones, and many of the restaurants are tucked underneath them. My friends and I joke that I would become an instant millionaire if I were to sue the entire street for inaccessibility, but alas I have yet to act on that dream. In those instances I have done my shopping online, figured out what I want, called the store up and asked them to bring the item out to me. It's a little weird, I agree -- but it works! And a few times... I have gotten some pretty awesome discounts because they managers regretted their inaccessibility.

Side note: There is a CVS nearby that has ONE step into it. Every time I pass by it I think in my head: YOU CAN'T CALL YOURSELF A CONVENIENCE STORE IF YOU'RE INCONVENIENT! 

You've got to look for the little uni-sex stick figure in the chair to find the golden entrance. Sometimes it's an even better adventure than playing a video game, other times it's like you're playing on the Nintendo Wii: Don't forget to dodge the construction site, avoid breathing in the cigarette smoke, and go backwards down the curb cut! 

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

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

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

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

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

What's on your list of perks?? 

Most of my friends now live in apartments in the city. This is a pretty boring observation given that many of us are now in our mid-20's and we're "at that age" where apartment living is an assumed norm. But I should add that most of my friends also do not use wheelchairs so apartments have a tendency to be less than wheelchair-friendly. Recently I was invited to two Halloween parties, both of which take place in living arrangements that are up at least a few flights of stairs and as one of my friend's put it "it's not the most Sandy-friendly set-up.." 

Can't believe we're quickly approaching the end of October. Wowzers! I don't mind it though, soon there is an excuse to dress-up and eat candy  =)

• Monday: Many of you have probably gone through something similar - The Fracture Timeline.

• Tuesday: As a wheelchair user there are just a few things about NON-wheelchair users that annoy me.

• Wednesday: Though I was completely tired from classes, I'm glad I took the time to listen! 

• Thursday: Having had an aide for most of my educational experience, I share my IDEAL aide here.

• Fracture Free Friday: What would you tell new parents of babies with O.I.? 

1. It's an Automatic Door. By Definition You Don't Need to Hold it Open For Me. 

At this point I just laugh to myself whenever I see the ridiculous set-up of most public bathrooms. Grab bars are angled funny and about 5ft away from...anything. And the toilet paper dispenser is either 2ft above my head or 3ft away from the toilet! Since disabilities vary so much I can see the challenge presented when building a "standard" accessible bathroom (or standard accessible anything for that matter); actually, when you really think about it, it is pretty much impossible. Today I am wanted to write about how I navigate inaccessible accessibility - not just public structures but the day-to-day living necessities:

Accessible Clothing

Most O.I.'ers are smaller in stature so it's pretty obvious that our clothes need to be as well. But there are other tips involved than just shopping in the child or junior department, or getting the smaller size of adult clothing - what happens if you wind up in a spica cast? Or what are the easiest pants to put on over that long-leg cast? What shoes do you wear right after your leg comes out of a cast? Here are a few things that might help:

1. Zip-Off pants/shorts: These are incredibly handy and I would hug the person who invented them. It's pretty self explanatory, but now you can go without the awkwardness of one foot freezing and the other snug in a cast!  

2. Athletic warm-up pants: I like these because of their stretchy material, and the zipper piece on the side of the leg. Another added bonus is their elastic waist band makes bathroom trips less of a hassle when you already have a bulky cast to deal with. Also the polyester stuff doesn't make it feel like an oven in your cast! 

3. Crocs/slip ons/flip-flops: For me, putting a sneaker or a shoe on after I just got out of a cast can agitate my leg. My ankle is not used to the added weight (and unsupported weight) at the end of my  leg. Not to mention, most times sneakers require a bit of pushing, shoving, and wiggling to get your foot comfortably inside - trying to do that after 5 months in a cast can be pretty painful! So after learning many lessons I now slip on my flip flops, or I break out my light weight Crocs, I also have slip on Chuck Taylor sneaks that I love!

4. Leggings/Over sized shorts: These are stretchy and work particularly well if you are lucky enough to have one leg free from a spica cast. I spent way too much time in spica casts when I was younger, I pretty much looked as thrilled as this kid below whenever I was in one:  

4. Zip-up hoodies/Button Up shirts/Vests: I pretty much lived in a hoody when I was in high school, but aside from their being timelessly trendy these are incredibly useful when you have a broken arm. You can get them in various sizes to accommodate casts that require larger arm holes, or if you can't fit the cast through, just zip-it up and you're still snug! Vests are a cinch to throw over because you don't need to play tug-of-war with the sleeve as you try to get the cast through.

Fracture-Related Accommodations:

When I was much younger (elementary school aged) I broke my legs frequently. This meant that I would be stuck in a long leg cast or a spica cast - making things like showering and getting myself dressed difficult without my parents' help. My mother would used to hold me on her lap with just my head in the shower as she washed my hair for me - it was annoying and I hated the dependence. By the time I was in middle school (and fractured my femur at least 4 times) I announced to my parents that I figured out a way to wash my hair on my own, here's how:

1. My shower was accessible, this means the shower head was attached to a long metallic hose that could be held in my hand

2. I asked my parents to turn the shower on for me and place the shower head in a place that I could reach

3. I reclined my wheelchair and parked it so that the handle bars and the top of my head pointed in to the shower

4. I then slid myself all the way to the top of my reclined wheelchair and was able to wash my hair like that... for the next 3-5 months of being in the cast 

***

I also learned how to angle my wheelchair next to the toilet so that instead of a long-leg cast just hanging off the toilet seat and dangling around, it could rest on the seat of my wheelchair or on an extended foot rest while I went about my business. 

***

Since I fracture my femurs and legs most often, I have always had a recline-able wheelchair. Even these however were unfit for bulky spica casts or long-leg casts that were longer than the length of a fully extended leg rest; as a result, I would have to rent a special recline-able manual wheelchair from my medical insurance company. These wheelchairs would always take forever to order, and often by the time they arrived I no longer needed to lay flat on my back! After years of this repeat performance and frustration of dealing with medical companies, my mother decided to take matters into her own hands: 

This board has around since the 7th grade

She measured out a wood board that was as long as a long-leg cast, cut out a piece of foam mattress the same length, then covered the entire thing with a piece of water-proof plastic (blue, my favorite color). At the edge of the board she put two hooks in and threaded shoe lace through the hooks - now I essentially had a portable recliner! Whenever I broke my leg she would whip out the board and tie it at the appropriate angle to the back of my wheelchair. It was comfy to sit on, durable, and always on hand! 

See how happy I am with the board? Oh, and w/friends too :-)

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? 

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. 

Every now and then I find myself out in public being pushed in my manual wheelchair by someone else. This chair is usually only used if I'm out somewhere with friends and needed them to drive me (manual wheelchairs fold into trunks easier than power chairs), or if I am somewhere that might not be accessible (these chairs are far lighter and easier to lift than power chairs). I didn't get my power wheelchair until I was in the fifth grade so I had been dependent on other people pushing me for at least 10 years or so as a young child.
Manual wheelchairs are not my favorite because they can easily tip over outside, and when I am using one it means that I am dependent on someone else to get around. Along with that it also means that I am at the mercy of that individual's wheelchair pushing skills. Some people are great at maneuvering me, their instinct and sensitivity for knowing just how much to tilt back to get over a curb cut is superb. Other people may carelessly bump me into door frames, or they do not realize that my small wheels don't just roll over pot holes in the same manner a car may be able to. But all of that doesn't usually bother me, and if it becomes an issue I usually help to guide the chair by putting my hands on the wheels when bumps or cracks in the sidewalk come nearer. This way I don't feel rude and it is an alternative to saying "hey, if I fall flat on my face because you don't see that bump my next fractures are going to be on your hands!"
What bothers me is the way people who push wheelchairs treat the person in the chair; usually it is quite unintentional and these mannerisms are totally oblivious to the pusher. Please note that what I list below are only things that bother me, and should not be applied to every single person in a wheelchair :

1. If you are talking to someone, even if that person is not addressing the person you are pushing in the wheelchair - turn the wheelchair to face the person you are talking to as well! One time this failed to happen and my friend ended up having a 10min+ long conversation with someone else as I sat there angled in a different direction, trying to find the crowd of teenagers at the mall to be totally engrossing. There have been many occasions when this has happened and after awhile I begin to feel like a wheelbarrow being shoved along, not a person who is actually there.

2. As many of us know not every single place in the world is wheelchair accessible. If the chair needs to be set aside while someone else runs inside the store or restaurant, avoid leaving the wheelchair in some remote or isolated place. When I was younger this happened quite frequently. I would be parked in some corner while my parents ran in to pick-up a lunch order or went to go return something; these errands would always be done "quickly" and I was always told "I'll be right back, just sit here." Obviously I'm just going to sit there, I'm not about to take off and soar into the clouds. If you're waiting in an isolated place what seems like 2-3 minutes can seem like hours; as a kid I used to dream up scenarios where my parents had actually left me there never to return again!

3. Ask if I would like to pace around with you. It's quite common to forget that you are pushing a wheelchair with an individual in it who is a totally separate entity from you. There have been times when suddenly I find myself going up and down corridors, or being swiftly jerked around corners and speeding at a breathless pace down hallways. Just because you are pacing around it doesn't mean the person you are pushing needs to as well. Or just because you want to chase after your friend  don't assume that the person you are pushing wants to join in on the wind sprint as well.

4. Talk to me not above me. Chances are if you're pushing me you probably tower over me. This doesn't mean it's appropriate to speak over my head if you are addressing me; I have frequently gotten confused when people do this because I am not sure if they are speaking to someone around me or actually speaking to me. This behavior along with my hearing loss adds to many communications confusions.

Take-away Thoughts on Pushing Etiquette:

• Just remember that the person you are pushing is exactly that, a person. If you are uncertain of how you should treat the situation just remind yourself of this and do what is most natural to you.
• If you're the person IN the wheelchair: begin to keep track of what really bothers you and what works; letting someone know "usually this has been the best way to go about it..." can save a lot of hassle and embarrassment instead of just literally, rolling with it.

My parents used to always remind me how appreciative I should be about living in the US. People with disabilities in other countries aren't always afforded the same liberties and independence that many of us might take for granted. Activities that I don't think twice about: going to school, hanging out with friends, going out to the city, and medical care may not always be as easily attainable for disabled individuals in other countries; of course it depends on the country and, I think, in part on the culture as well. As an American tourist in Hong Kong and Macau for two weeks this different perspective had its ups and downs for me. 


I am too curious of a person to not want to experience things first hand. It doesn't matter what it is, if there is an opportunity my first response is "why not?" So with that attitude in mind I wanted to go everywhere and see as much as possible. My enthusiasm though was met with a ton of staring and gawking, the kind of eye contact that lasts a little too long for comfort between two strangers. Between two adults, or groups of them from young adult to the elderly. Never have I experienced this kind of ...thing... before. Their strange stunned stare was a mix of their curiosity, their sense of awe, wonderment, and a dash of confusion. In that part of Asia there were a lot of tour-guide led groups, many of them were from India, China, Korea, or Japan. The countless pairs of eyes that darted to me and away from whatever monument or statue they were supposed to look at was shocking to me: at times I felt like their staring meant I didn't belong there. As if they were silently telling me I didn't fit in with their culture, the environment, or their expectations. Suffice to say, I was confused by their confusion. 
Surely these people had seen a wheelchair before? I am always hearing about how in some countries in Asia the population of elderly is growing at a rapid pace - I knew that disabilities and assisted devices like wheelchairs, walkers, canes, and crutches existed in their worlds and communities. So what was wrong? What was with the slightly crude staring? 
And it wasn't just a slight glimpse or quickly meeting their eye-contact and then the other person would turn away. It was a stare, one that I would hold as I rolled along a few feet at a time. For the first few days this happened I would flinch a bit and then quickly look down at the floor or away, but still I would feel the intensity of their eyes on me. I was very uncomfortable and was exhausted by just the constant barrage of silent questioning I could sense. However by the end of the first week I decided to heck with them, I had flown to the other side of the world and could not afford to let awkward cultural differences get in the way of vacation time with my family. 
Maybe it's a cultural difference? Are people in the States more subtle about noticing differences than in other countries? (This was really the first vacation where I was consciously making an effort to be observant about this behavior..) Are Asians more blunt about things? My parents were both immigrants from the Eastern hemisphere, (one from Vietnam and the other from Hong Kong) and so I was raised within an Asian culture. I have to say that I think we are a little bit more blunt than Americans when it comes to personal differences. I have known Asian parents (including my own) to berate their kids for being too stupid, too fat, too slow, or anything that wasn't an accepted societal norm. (For those of you who have not heard of the Tiger Mom article, please refer to this). So is it because I am not seen as visibly 'perfect' and don't look 'normal' with my bowed arms, barrel rib cage, and large head that was the fodder for the staring? I don't know and because I was a guest in the country, and many of those who were staring were elders - I never confronted anyone. 


I know I wrote quite a bit about how uncomfortable the staring was for me, but this was really the only major hiccup. Whenever my manual wheelchair needed to be lifted into a store because it had one or two steps the employees were always very helpful and made no commotion about it. Or if we were eating at a particularly crowded restaurant staff made sure that my wheelchair had enough space to pull up to the table, and surprisingly (and unlike in the states) no one talked to me like I was a young child! 


If I could rate my experience traveling in Hong Kong & Macau I would rate it a 7.5/8 with 10 being the best experience and 1 being the worst. I had a lot of fun, I really appreciated the patience my family had when it came to managing accessibility logistics, and am glad that I got to travel at all! Once I get a minute to breathe I will upload more pics.. thanks for being patient!

Tips on International Traveling:

• It's important to stay open minded. It's not just about the culture that you are visiting and absorbing, but be open to the impact you might have on that culture
• Bring your most reliable and easily manageable wheelchair. (A manual wheelchair if possible!) Although having a manual wheelchair meant giving up some of my independence when it came to pushing myself around, I was able to see and experience more in it than if I had my heavier power wheelchair
• Don't expect things to be done like you are used to, and never assume that they should be
• Although you are in a foreign country, being in a wheelchair has some universal experiences: needing to sit down and therefore being at a lower level, and the need for elevators/lifts/ramps. I have found that people everywhere are aware of this and will try to meet these most basic accommodations 
• Someone who needs help knows no barriers. A person needing help is a person needing help regardless of what language they speak, culture, or country you are in. Don't be afraid to ask for help
• When booking ANY flight (whether domestic or international) don't worry too much about choosing seats. When you get to the gate and check-in, notify the person at the desk that you are in a wheelchair and they will always try to move your seat for you - usually closer to the front or to the restroom
• Expect to board a plane earlier than other passengers, especially if you need the assistance of an aisle chair
• Always stick with family and friends!