Showing posts with label wheelchair public transportation. Show all posts

All Aboard! Public Transportation

Users of public transportation know what a pain it is to get on that bus or subway car during rush hour. So when you take-up space for at least two people, can't get to the allotted 'Wheelchair Seating Area' because of the miles of bags and jackets in between, and you're trying to avoid the glares from accidentally nipping his & hers fancy work shoes with your four wheels -- I am going to argue that it's an above average pain.

If there is one thing that I strongly dislike about being in a wheelchair, it's that I can't stand being a logistical hassle. As a personal preference (that has nothing to do with being disabled) I like when things are efficient and user-friendly... so before I start sounding like an ad for the latest Apple product, let's just say that commuting on public transportation and other daily-life accommodations are usually less than hassle-free.
It makes my stomach turn. I am fervently hoping that I will magically evaporate into thin air. And I pretty much just avoid all eye-contact while listening intently for someone to say "could you move out of the way?!"
But I am beginning to do it enough that the city-life attitude has been rubbing on to me. That air of 'get-out-of-my-way-I-have-places-to-be-and-things-to-do-ten-minutes-ago,' and when people strut off the subway platforms and plow through to the exit doors - I have gotten good at zooming in and out of open pockets of space in the crowds. Eyes straight ahead, ear buds in, hand on the joystick and I will dare anyone in their best business suit to even try to cut me off. Save yourself the crushed toes and just don't.

Here's the thing though, there really is no reason anyone should feel embarrassed, guilty, or like it's a hassle because you're holding up the subway car so the conductor can figure out how to deploy the lift. Glare straight back at the impatient passengers who are pleading with their eyes "oh my god, seriously, why am I stuck on the train with the wheelchair person taking forever?!" Because the fact remains that you are not taking forever. The conductor who should know his or her job is taking forever to figure out how to get the lift working.
Also it's public transportation! Just because we are genetic mutants or minorities, or have been given medical labels like "rare disease" - doesn't make our position in the public any less valid. There is no membership card needed to be a part of the public. You exist and you live in that community, you are the public. Our four wheels is just as deserving of that commuter rail ride as the person on two legs. The time it takes for us to roll on to the platform and watch the massive wave of feet shuffle over, should be just as expected as when someone rushes through the closing doors to squeeze onto that bloated train.

One morning I waited on the platform, dressed for work and prepared for a presentation I had to give at one of those meetings with donuts & coffee on the back table. The train pulled into the station, the crowd got on and I wasn't aggressive enough - and realized dishearteningly that it'd be better for me to wait for the next train. (I had a presentation to give, I didn't want to risk a broken nose because the morning commuters had elbowed me in the face).

"Hey are you getting on? There's space." A guy called to me from the still opened doors. There wasn't actually space, but he was gesturing for people to squish into the center of the train.
I eye-balled the area that was steadily getting larger with every step inwards from casual-dress shoes and high heels. The doors would be closed any second and I had to make a decision. Would I get on? Would I wait for the next train?
"C'mon, c'mon, we've made space. We can all get to work on time!" 

I took a deep breath in and thought here we go, let's do this! 

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Two Views of Accessibility

For a long time I thought accessibility just meant ramps, elevators, and my ability to access Point A to Point Z while accomplishing tasks L, M, N, O, P in between. My view of accessibility was determined by the people that I was around - and for awhile that meant people who didn't use wheelchairs. In other words, my definition of accessibility was limited to accessing whatever they could access:

"Hey Sandy, want to come with me to run an errand in Boston?" My R.A. asked me one afternoon, it was early on during my first-year of college. Not really having experienced the bubble outside of campus I agreed to go.
During the trek to the station S was incredibly patient in looking for the curb-cuts, and helped me find the easiest point of access to cross the busy four lane streets of Mass Ave; the whole time I made sure to make mental notes of when and where to cross. Finally, we got to the station. The entrance to the Harvard Sq T-stop sat in the middle of what local students called "the Pit." There were two sets of stairs that led down to the the station where the subways were running - no elevator was in sight.
"Hmm.. okay so let's look for the elevator." S went to go inquire and was directed to a decrepit small dome-like structure. The elevator doors rattled open, I looked in horror at the tiny metal cage that awaited my entrance.
"Is this going to fit the both of us? I guess we'll have to try!" I rolled in first and S nestled in beside me. Once inside we gasped simultaneously, the tiny metal cage also had an enormous urine stench. The box rattled down as we held our breath, the second the doors opened I sped out as we both gulped in the air of fresh popcorn and pretzels - subway station food.
Our next stop was Park Street station: where the red line intersects with the green. "THIS IS THE RED LINE TRAIN GOING TO BRAINTREE..." We heard the conductor announce, the rest of what she said quickly became garbled by the rush of passengers in and out of the subway car. The doors slid open on both sides of the subway car, we exited and began looking for the accessible way out. After wandering about like chickens without heads, we came to realize that the elevator was actually on the center platform - we were on the one farthest to the right.
"Well now we know this for next time - we'll have to wait for the next train to come and then we'll just go through it to get to the center platform." After a few more elevators S and I finally reached street-level, we romped around the city for a bit and returned to campus. On our trip back to campus, the route was much more familiar to us - subway elevators, bridge-plates, curb-cuts, and center-platforms became new vocabulary in my ever expanding college student curriculum.  

That was then. And since the days of my naive freshman year, I've come to memorize which stations are accessible, and the general location of where elevators are in each station. But then I began this blog, became acquainted with wheelchair users, and my world of access in terms of public transportation was thrown for another loop:

"Okay so this elevator can fit two chairs and a walker.." D rattled off. There were five other wheelchairs in our group, and it was my first time out with other chair users - to say I was a bit stunned by the procession would be an understatement.
"So you've memorized how many people fit into each elevator? That's just.. weird and incredible." I told her when we rolled inside.
But as I thought about it during the 10 second ride down, I suppose it made sense. D had gone to a high school that was a boarding school for other disabled students; many of her friends had varying disabilities and it seemed, in an odd way, a social-world somewhat different from the one I knew. It didn't take me long to realize that her scope and understanding of accessibility was far more expansive than mine; it didn't just mean getting from Point A to Point B. D's view of accessibility included other wheelchair users as well, it meant more than just getting there - it required getting there efficiently while together, regardless of whether you were in a manual wheelchair, power chair, standing, using a walker, or had a vision impairment.
"Then we're going to cross over from Downtown Crossing, and that elevator can only fit two wheelchairs.." D sped off and the group of other chairs rolled behind us. When we got to the platform I parked at the one closest to the entrance, but D kept going down the length of the platform - farther away from me. I gunned my wheelchair after her and asked,
"What? What are you doing? Why are you going all the way down here?"
"Because the elevator at Back Bay station is down on this end, so when we get out it's just easier to be on this end of the train."
"..Oh.." I responded. Her knowledge of what accessibility meant on the subway station continued to blow my mind all the way back to our friend's apartment. In my mind I hadn't realized that just because we require things to be accessible doesn't mean we can't also make things efficient. When 'normal' folks use public transportation, they walk up and down entrances or exits without a second thought. There is an ease to which public transportation users are able to navigate the system; with the added layer of accessibility it means we should expect the same user-friendly ease, but as I have learned it requires some  amount of memorization.

The truth is I probably won't ever memorize where to wait on the platform so that I am lined up perfectly with the elevator at the next stop. I definitely won't remember how many wheelchairs and walkers can fit into the Park Street elevator. And I probably won't ever remember about the double elevators that you need to take for the Inbound Red line station from South Station. However I have come to realize that accessibility is about far more than just getting there. When we think about accessibility as a way of life vs accessibility as a way of access, the approaches are completely different. And I'm slowly beginning to realize that one adds far more quality to my day-to-day routines than the other.




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Things I Wish I Didn't Need to Do

1. Making sure a place is accessible. I have often wondered what it is like to just know that I will be able to access everywhere I want to go. These days we have online resources like 'Yelp' that will say whether or not a place is accessible but sometimes they are not always accurate and it's best to call ahead. A few times I haven't been sure if a potential place of employment is accessible; when this happens I have either gone to the place myself to 'scope it out' or simply asked AFTER I have gotten the date for an interview.

2. Reassure that I am 'old enough' over the phone. For the gazillionth time NO, I am not 7 years old and no my parents are not around to give permission for me to speak with you. Besides, what 7 year old do you know will ask for parental permission to call a bank in regards to her account statement?

3. Hold up the bus or train. It is usually a rush hour and there are about a thousand pair of eyes silently yelling at me to hurry up because I need to get to Point A 10 min ago. Meanwhile the driver of the bus or train is fumbling with the machine that lowers the ramp, or trying to strap my wheelchair in securely. Believe me, I love going fast as much as the next rush hour city dweller, so if I could bypass all of that logistical hassle I would!

4. Be nervous when I crack my joints. This seems ridiculous and silly but it is what it is. It wasn't until about 2 years ago when I discovered that I could crack my back without winding up in a body cast! In a weird way I was excited and probably acted like a baby just realizing how to hold their own head up. But in a broader and more general sense, I wish I didn't need to be nervous about potential injury whenever I do something as simple as cracking my knuckles or taking a clumsy fall. There is no such thing as 'clumsy' in my world, there's either "I fractured" or "I was lucky that time.."


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Top 5 Pet Peeves: Non-Wheelchair Users' Behavior

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

I'm not really sure what else I could say about this but it happens quite often. When you see me entering or exiting the CVS don't be surprised when I give you a dead pan you are a moron look if you're holding open the automatic door. Not only are you being unhelpful but you are also, most likely, standing in my way by holding open the automatic door. I'm not ungrateful, I just think that you should give technology a little bit more credit.

2. Glancing Over at Me Multiple Times But Pretending You Are Not Looking.
I have always believed in owning up to your actions. So if you're going to stare, then stare. Let's not play the stare-tag game whereby you look at me and then when I look at you you quickly turn your head away; and then when I think I've put a stop to it you turn your head back, but my peripheral vision is uncanny in both its width and intuition - I know that you're staring again so I look back at you. You quickly realize you've been caught red handed and turn away again... and well, do you see how boring this gets? Next time, just ask for my number or be ready for me to ask for yours.

3. You Don't Need to Ask My Permission to Take the Elevator.
Until I get a private elevator in my own home this is a public elevator. If I am already in it and the doors are about to close any second, you don't need to ask whether or not you can join me. I'm not going to say "no" because I was raised better than that. And I'm not going to pick-a-fight about how you could just take the stairs because it's probably faster for you. And nor will I make you uncomfortable by silently judging you during the 45 second ride. It's an elevator, we've all got places to go and things to do, so let's just move along with our day. 

4. Please Don't Scream In Shock or Horror As You are Opening the Bathroom Door.
I know, I am a small person on wheels. On very fast wheels. But I've been told that I'm a friendly person, I'm fairly open, and enjoy meeting other people. So there's no reason to scream at me if I am either exiting or entering the public bathroom. This usually happens right when the door cracks open enough, you are still in your own world looking straight above my head, and you won't notice me until you realize you are about to walk into or over me, then you look down and do a little "aaahh!" And for the sake of our bladders, let's not risk shocking each other into accidents in our pants okay? 

5. You Don't Need Access to that Curb Cut But I Definitely Do. 
It really ticks me off when there is a crosswalk and as we are crossing you will head towards the curb cut at the exact same second I am heading up the mini-ramp. My irritation is only heightened, and your (hopefully) self-realized idiocy is emphasized because all around us there are at least 20 other people who have figured out that they can walk down or up the sidewalk that is merely inches away. Most of the time I have realized this is because you are staring at me and you will (maybe without realizing) head towards my direction. I wish that in the seconds you are looking at me you would realize "oh that's a person in a wheelchair, oh she needs the curb cut and I don't." Next time this happens, do tell me what is going through your head instead. 

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Urban Rolling: The Ground Never Looked So Interestingly Dangerous

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!
As a wheelchair user in my home city I know how long to hold my breath as the elevator to the Park Street station opens to avoid breathing in a urine drenched stench. I also know which bus lines will allow me to ride for free, and most importantly how to get to Fenway Park when the 'normal' station everyone else uses (Kenmore) is non-accessible. I have an internal clock that lets me know how many seconds I have in order to look for where the train is leveled with the platform before doors slide shut. And when the elevator buttons have the letters M, UP, and P on them - I know that those stand for Mezzanine Level, Under Pass, and Platform respectively. It certainly took me several years to get the hang of it and sometimes I still get a little confused as to where elevators are, but public transportation is definitely my preferred method of getting around town. I don't want to spend too long talking about public transportation systems since my readers hail from all over the country (and world!) so the various train systems will differ widely, but I will encourage you to at least try it out! 

The patchwork of different textured cement, brick, stone, and pavement is something that I find weirdly fascinating; especially in a city like Boston where renovations and construction projects are never-ending as it tries its hardest to hold firm to historical roots. One second I will find myself cruising smoothly along freshly laid granite when suddenly my wheels will hit cobble stones, and I'll feel like a bobble head doll! This might just be me but on routes that I have traveled many times I have memorized not just mentally but physically what to expect. Depending on the material the sidewalk is made out of my body automatically positions itself in preparation. If it's brick I straighten my back a bit more and tighten my stomach; if it's cobble stone I am barely breathing and only trying to not go too fast; and if it's pavement that's been all cracked up I am much more relaxed and going over the crevices slowly but steadily.
Maybe it's because I grew up in Boston or because I have had so much experience wheeling through cities but so much of my travel instincts come naturally to me. I innately know that although that sidewalk crack may not look big, it actually will send quite the thud through my entire wheelchair and body as I cross it. And what about that brick path that goes on for about five feet? I know that I need to be careful of their corners and edges that jut out awkwardly from the surface. I also know that when curb cuts aren't around in a residential area I quickly borrow someone's driveway to cross to the other side. My eyes have become superb at guesstimating the height of a bump, will my wheelchair be able to handle that? Will I need to stiffen my body in anticipation of the thud as the chair returns to even ground? Scanning the sidewalk for a small enough place to drop down or climb over has become second nature, I guess it's kinda like when an experienced tailor eyes a suit. 

Taking caution while traveling in the city is especially necessary if I am wheeling about with a fracture. Even the most natural looking sidewalk crack that doesn't have a single blade of grass growing between it can send reverberations through a broken limb that will have me slow my wheelchair down to a crawl; I have been known to hold my breath as I tap the joystick of my wheelchair ever so slightly to nudge my wheels over a bump. I remember when I was younger if I had a broken leg my parents would put me in the stroller but I would plead with them to take their time going down the sidewalk. They would usually respond with something like, "Doesn't the cast hold it still? Why does your leg still hurt? There are no big bumps on this sidewalk, you will be fine." But they never understood why the neatly squared and separated pieces of sidewalk would make the fractured area feel so sore. 
A couple times when I have NOT been as careful as I should have been I have hit bumps or hopped off curbs that were a little too high; with a sharp breath I'll breathe in and for a split second I wonder if I have broken any ribs, my back or maybe my tailbone. Fractures that happened like this have only ever happened a handful of times but each time I am logging it into my mind: What landmark is the bump nearby? What street is it on? Where should I have steered instead? All of this ends up adding some more topographical detailing to my mental maps, for the maps of my wheels. 

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. 

Rolling with it in the City:
  • As with anyone else, the longer you live in a place the better you'll know it. Finding the best routes for your chair to go will take experience and time - allow both of those to grow! 
  • Go with your gut feeling. If you think that you probably shouldn't try to fly over that curb cut or over the pot hole... DON'T! Try to see if there is a way around it - this might even take some back tracking and finding an exit that you may have already gone by
  • Wheelchair routes may not always be visibly obvious. Don't hesitate to ask someone which path would be best for your chair to travel
  • If you're adventurous and willing, try exploring your city's public transportation options for the day. Many cities have discounted fares for the disabled and other companion benefits
  • If possible, I would recommend traveling in an area when it is daylight out before you go through it at night for the first time (for safety and visibility purposes)
  • When crossing the street, make sure you are comfortable with the curb cut at the crosswalk (that you have found a place that is not too high) before crossing. It won't be the end of the world if you need to wait for the walk signal to tick off again while you find a safe place. The worse nightmare would be if you were awkwardly stuck on a curb cut as cars are whizzing by! (Yes, I am speaking from experience). 

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Hong Kong & Macau Part 1 of 2

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."

"Why?"
"Many babies with disabilities born in China are institutionalized for 'research' or never leave their homes, they can't even go to school." 
A life inside the house? No school? No friends to play with? As a young child (and even now) I couldn't imagine leading such a life! 10 years ago when my parents took my older brother and I to China we were looking for Eastern medicines that might help or cure my brittle bones. Although I barely remember it I was taken to a hospital where my parents spoke to researchers who told them they could leave me with them; the hospital was an institution where I would be used for research though they couldn't promise a cure or any medical benefits. They told my parents that there were already several others with O.I. staying at the institution. Needless to say my parents didn't opt to do that and instead I was able to visit Tiananmen Square, the Great Wall, Beijing, and Hong Kong. 



Fast forward 18 years later:
Over the past two weeks I traveled to Hong Kong & Macau with my family. This time around we were not looking for medical cure-alls, we were just being tourists. As with heading into any new location (be it a state or country) I expected transportation, accessibility, and general traveling (sidewalks, curb cuts, clear paths etc) to be challenging to navigate. Keeping in mind what my parents told me about disabled people in Asia I expected totally inaccessible places however I was actually pleasantly surprised! And while it wasn't perfect there were several accessibility accommodations that Hong Kong & Macau actually does better than what I have found in the U.S.!
The island of Macau is roughly a 45min ferry ride from Hong Kong where the international airport (and our plane) landed. I was a little nervous about how much of a hassle it would be to get me on and off the ferry but the crew on board was incredibly adept! There were ramps and crew members at the ready to help hoist my manual wheelchair over the small lip to get on board; I transferred into the seat and my wheelchair was rolled away, carefully locked and stowed with the other luggage. Once we were all settled on the boat one of the crew members asked if we would be needing help to get off the ferry and onto the pier once we docked at Macau - in other words, somebody would be waiting on the island ready to push me up the long ramp to the Macau Customs & Immigration floor. Crew members and Customs Officers were always courteous and careful when pushing me over bumps and down steeper parts of ramps; there was never any issue when it came to using an elevator or chair lift and in fact my family was able to cut a couple long lines during the course of the trip because the elderly and disabled went through a separate gate.
But then I had to go to the bathroom. All the accessible bathrooms in Hong Kong and Macau were in its own room, usually located between the regular men and women's restroom. Always clearly labeled with the universal stick-figure wheelchair sign, what I first noticed about the accessible bathrooms was that the doors into the bathrooms all had a horizontal push bar that was lower and right at my level! This made opening the doors extremely easy and manageable on my own. Inside there was always enough room for my wheelchair to turn around, a lower sinker, and unlike in the US the grab-bars weren't stuck to walls 5ft away from the toilet, instead they were attached to the toilet and could be easily adjusted as necessary. I was relieved by how clean and easy everything was and never had to worry about finding an accessible bathroom that was in working order during my entire trip.

To get around Hong Kong and Macau people usually take public transportation, or a taxi (the locals tend to drive mopeds). On our first night there we were taken advantage of when the taxi driver charged us extra because we had to stow my wheelchair in the trunk (apparently the ticker automatically starts charging when the trunk is opened), after that incident we opted to just walk every where or take public transportation in Hong Kong. In Boston, where I am from, public transportation can be less than ideal. Not all the trains are accessible, sometimes elevators don't work (and there's no one around to help you), there may be absurdly large gaps between the platform and the train and other inconveniences. In Hong Kong - not only were the subways immaculately clean (no food or drinks allowed and they also had televisions to watch the news!), but they were all accessible. The platform and the train itself were always leveled and there was never any need to have a conductor come out and operate a complex chair lift to get me onto the train. One thing in particular that I found helpful was the clearly marked sign on the platform for where wheelchairs should wait. Unlike in the states I sometimes have to guess where I should wait on the platform in order to park in the allotted wheelchair space once inside the train; in Hong Kong that place is always lined up with the wheelchair symbol on the platform - my family and I always had a place on the train and there was never any pushing or shoving to get on. The terror of large bustling crowds in a small confined space like on a subway train is always an OI'ers worst nightmare.
A couple times there wasn't elevator service to the station and we got frantic and became completely lost. However we realized that throughout the stations there were Metro-Assistance telephones for the sole purpose of contacting someone who worked at the train station. When we called they always knew exactly where we were and came to our assistance within minutes, they would walk us to the exit with elevator service and help us on our way - even allowing us a free pass into the appropriate gate! Many times in Boston I have had to pay double or triple because elevator service was out, or I had to take another shuttle bus to where I actually needed to go. I am quite certain that if public transportation in Boston could be as efficient as it is in Hong Kong then that dear city would be filled with more pleasant folks!

Once at street level we were in a city that is hundreds times more busy and stuffed with people than NYC's Time Square. People fill every nook and cranny, and they are always constantly moving, chattering (loudly!), and busy bartering for lower prices. It is at once a joy yet exhausting to be in that environment, especially in Hong Kong's humid weather where rain would drizzle for a few minutes at a time - providing relief for the city's tourists while locals popped out umbrellas and expertly maneuvered to their destinations. At first I was terrified that someone would bump into me, fall on me, or swirling shopping bags would shove me aside but this never happened. Thinking back on it I don't understand how that didn't happen! No one bumped into anyone else, I rarely saw any shoving or pushing aside - movement was always fluid and continual, it was like a dance that everyone just inherently knew the steps to. The beat to this dance was dictated by the open door restaurants and street shops that lined the smooth sidewalks for miles on end. Folks would skillfully step away from the main street flow and into a shop for a few minutes, or duck into one of the mouth watering restaurants for a quick bowl of ramen or roasted duck with rice. The only complaint I have for the city is that curb cuts were less than ideal. They were always roll-able but few were ever actually level with the ground, most had a small 2 inch lip or bump that required a quick wheelie on my part - but this was a small detail and didn't impede on my overall experience. 

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The (In)Accessibility of Places

"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. 

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O.I.ndependence Away From Home 2/3

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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On Folding the Wheelchair

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. 

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It's Always an Adventure

Of the many ridiculously random skills that I have, one my friends enjoy is my knack for turning everyday events into an adventure. They might think they're just bringing Sandy along for the conversation when they're going to buy errands, but little do they know that instead they'll take a trip down the cargo elevator and then trek across what seems like a snowy Alaskan tundra to go back to the dorms. Whether it's getting stuck in a snowbank, looking for appropriate curb cuts, finding accessible entrances, or getting wheelchair lifts to work - what should be a simple mundane task always manages to become some humorously awkward hoopla.


Well, this one time when we went to go see a movie it was no different:

We were told that the movie we were seeing in would be upstairs, and the dreaded words "follow me, we'll take the lift..." were uttered from the usher's mouth. 
This is just my opinion but whenever I need to follow anyone to "THE LIFT" I begin to get a bit annoyed. There is probably a lot behind architectural codes and building requirements that I don't understand, but why can't we replace those shifty tin boxes that jolt up and down 5 ft at a turtle's pace with an elevator? Or better yet just a ramp of some kind? I'm sure every wheelchair user knows what I'm talking about. You roll into, quite literally a box, and the metal door slams shut. Immediately you feel like you're in a cage, or maybe some kind of amusement park ride - like this particular one at the movie theater. After a series of cranks, slides, flips, and pulling the lap bar across me - the usher had locked me inside of the metal box. This particular lift hung onto the railings of the stairwell, which by the way, was accessed by going down a rather shady hallway. And isn't it always accessed via some shady hallway?! She then took the control box which was attached to the contraption by a cord that looked like it belonged to an old fashioned telephone. The bungee jump cord was spiraled and tangled a bit, but nevertheless she got it to work. She flipped the ON switch, and pressed the magical red button - from somewhere lights began to flash, and - I kid you not - a THEME song began to play. And did you ever notice the uncertain silence that accompanies these situations? You, as the wheelchair user, appear too confident in your silence as you sit there self-assured that Yes, This Is Just Another Day In My Life - while the operator of the machine silently responds with: Yeah, I Am Just Doing My Job. Usually only a "are you ready? Here we go" is exchanged between the two parties. She walked along side me as the tin box ascended the staircase. I felt a bit like an animal being walked with a leash attached to me. 

The contraption spun around a turn on the stairwell and glided to the top of the staircase. She unlatched, unlocked, slid open, lifted up, pressed OFF, and soon I was released from the tin box. My friend and I went into Theater 1 and sat happily watching a big screen for the full 2 hours of the movie. But then we it was time to go back downstairs. 
It was someone different who operated the clanging box this time. Not thinking that it would be an issue, I told my friend that he could wait for me in the lobby and that I would meet him there in a bit. This someone different secured me into the box in the same way the first person did. Except somehow she had gotten the bungee cord wrapped around the gears of the contraption, or something like that. The point was that after 5 minutes nothing was moving, I was still at the top, patiently awaiting for the theme music to turn back on and for my slow descent to the lobby. As she fussed and tugged at the bungee cord I attempted to put a helpful look on my face. But contorting my face muscles into one of patience and calm is, I will admit, rather difficult for me. Especially when in my mind I began to play Worst Case Scenarios in my head. Would I be stuck here for hours? Will I have to leave my wheelchair here? What if this stupid box suddenly breaks on the staircase with me in it?! Will I plunge to my death? And on and on I went... 
It wasn't long after that I exchanged a few frantic text messages with my friend. We decided that he would carry me out of my wheelchair and sit me down on the bench in the lobby. It was deemed safer for the staff at the movie theater to figure out how to get my wheelchair down without me in it. 
"Sandy it's going to be okay. This doesn't really make sense - they are saying that your wheelchair might have been too heavy for the lift to begin with but you went up the staircase without a problem, going down should have been easier." My good friend sat next to me in the lobby and tried to calm me down. I sat there silent, I'm sure he could hear the wheels in my head squeaking away with a frenzy of worry and a bit of embarrassment. I thought to myself: We were just seeing a movie. Why does everything need to be such a hassle with me?! I told him that I felt bad, that it was embarrassing, that I couldn't believe this was actually happening. 

"Hi, so it's your wheelchair eh? Are you okay?" A paramedic crouched down next to me, she had blue latex gloves on. I told her that I was totally fine, that I was just chilling with my complimentary water bottle and now, 15 min later my friend and I were just hanging out with some free movie tickets the manager had given us. And why is it that emergency personnel always ask the most obvious questions? Clearly I am okay! Clearly my wheelchair is stuck. And even more so, clearly, more than 2 people were needed to carry my power wheelchair down the 2 flights of stairs. 
They called "man power" in for back-up and in a few minutes a firetruck had pulled up to the front of the theater. In walked several muscular firemen. They walked in confidently, were directed to where the problem was and though I still had to wait helplessly on the bench, just seeing them made me more hopeful. Within a few minutes of their arrival they came through the door, then they came around the concession stand and I saw a firefighter steering my wheelchair over to me. I smiled, but my grin of relief didn't come until after my friend had put me back into my wheelchair. Everything was working, everything felt the same, I was glad to have my independence literally back under me. 

Trouble-Shooting in Public:
  • Life happens and especially with public accessibility devices you can't always expect them to work 100% of the time. You can only hope and do your best to remain calm. I've learned that it doesn't change the situation much if you are sitting there frantic with worry and embarrassment over the situation
  • Tell yourself that things will work themselves out sooner or later. There are emergency personnel, elevator technicians, staff, caring friends, and your own knowledge - amongst all of that a solution will be found!
  • If your wheelchair does need to be carried or moved down/up stairs or into/out of a building - I have found it safer for me to NOT be in the seat while the chair is being moved. Have a friend or a staff person you feel confident with help seat you somewhere else that is away and safe from the commotion. 
  • Though I didn't know it at the time, I now know that it's helpful to know how much your wheelchair weighs so that you can tell employees or emergency workers what to expect
  • Don't feel embarrassed! I have learned that it's the responsibility of the place to have their equipment functioning and in working order. 
  • Making a fuss and aggravating the situation even more so as it is happening tends to put everyone involved on edge and the entire situation can become tenser. If you choose to do so, you can appropriately express your disappointment or concern with how things were handled after the problem has been solved. 

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It's There for a Reason

"Sandy the school spends like thousands of dollars to get this accessible equipment and then you don't use it. Could you please just... use it?" Asked the staff member behind me as we exited the brick building. I pushed ahead on my joystick, instinctively timed the roll so that I could lift my hands up, push against the doors with both palms, and fling it open just in time to return my wrist to the joystick and seamlessly roll through.
"But the automatic button makes the doors open so slowly! I'd rather just do it myself." The staff person had pushed the handicap button anyway and I could hear the low hum of the automatic doors being held open, you know, just in case someone might take 12 hours to exit; at that point I was already up the ramp and on the sidewalk half way to the dining hall.
I rarely use any accessible equipment. This includes trays that are supposed to be on my wheelchair, any arm or headrests are quickly taken off, and most useless to me is the grab bar in all accessible bathroom stalls. Sometimes when the toilet roll is 500 ft away from me I twist a bit of toilet paper onto the grab bar before getting onto the seat, but otherwise there is never any 'grabbing' of the grab bar on my part. Always I recognize what's there but I enjoy the challenge of NOT using what's there and figuring it out "on my own." Once in awhile though such 'challenges' have literally gotten me stuck, here's one such incident:

Just a note: In Boston the public transportation is called the "T" or the subway. 


I firmly believe that public transportation anywhere, for anyone in a wheelchair, is just a convoluted maze. The mess of outbound, inbound, express trains, elevators to underpasses, elevators to mezzanine, elevators to street level, broken elevators, shuttle buses and special stop subways get me frantically confused. Usually I feel like I'm a mouse running around an underground maze in an experiment for humans when I use the T. So that afternoon was no different.
My disability T pass was ready in hand and, like usual, I went to go tap my card on the accessible gate. I tapped and immediately the embarrassingly awkward "error" noise blurted from the machine. I read the error message on the gate screen: THIS GATE IS NOT IN FUNCTION. PLEASE SEE ATTENDANT FOR ASSISTANCE. As usual, the little booth where a T personnel should be sitting in was empty. I waited a few minutes and still no one came down the stairs. Looking around I spotted an Emergency Box with a red button; I didn't think my situation would be considered an emergency but there was no one else around. So I let out a hesitant sigh and pushed it. Candy wrapper noise came through, and then a few squeaks and some other garbled static. I thought it was probably all the ghosts of the rodents who lost their sorry lives in between the tracks trying to communicate with me; a minute passed and still there was no human voice. Exasperated and not wanting to be late for my meeting I reached THAT point.

"Alright, screw this, I'm just gonna go through the regular gate."
I went to tap my card on the non-accessible gate and it slid open. Unlike most power wheelchairs mine is fairly compact and small; it can turn on a dime and had gotten through some tight corners and entrances before. I trusted that my Silver Bullet wouldn't let me down this time. My wheels slid through the first 5 inches of the gate and then I was stuck. Not just stuck, I was wedged in. As I tried to move the joystick forward or back I could hear the squeaking of my rubber tires against the metal, it was like putting a cork back into the wine bottle - as snug as could be. I began using my arms to push against the sides of the metal gates while using my elbow to guide the joystick through but it was a no-go. I began rocking back and forth in my seat, slamming my back into the seat in hopes of getting something to budge. Finally, after a few intense moments where I flirted with whiplash I was set free. By then a few others had come down to the platform and pretended to not notice my awkward predicament. Quickly I wheeled around, headed towards the elevator to the street level and sped towards the next nearest subway station.

Accessibility Suggestions:

  • I've come to understand that it's true, in most situations, the accessible equipment isn't exactly set to an appropriate size for someone with O.I. But, as I should have in the above situation, assess carefully and don't completely undermine the logic of all public accessibility equipment. 
  • It's important to not "what if..." your life away and to be constantly thinking about "what if this happens.." or "what if that happens..." it's better to have some idea of solutions that might work in more common situations. I.e. who to contact if an elevator is broken, or can you call a friend look up the information for you? What happens if you are injured on the train? What happens if your wheelchair malfunctions? 
  • If you are someone who is older and more experienced with public accessibility, you will probably come to find that many employees aren't sure how to work accessible equipment themselves. Though this can be frustrating it might not always be their fault (maybe someone didn't train them?!). So if you do know how the equipment works guide them through the process, and help them figure it out with you.
  • There are countless places that say they are accessible but, well, may have missed the mark a bit. In some instances the issue might be age of the building, it's a historical site, or budget problems. Whatever is preventing the problem, be sure to let the building managers (or other staff member) know you realize it but it is still "disappointing" or "unfortunate.." Expressing your dissatisfaction in a constructive manner is important to let others in the community know that this cannot be ignored.
  • When elevators break, or "regular" public entrance seems impossible - never underestimate the power of the loading dock at a store, mall, or other large gathering area. 

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