Showing posts with label All chairs should have wheels. Show all posts

...Is when I'm not in my wheelchair.

Even though during the day I rarely take conscious note of my chair, it is still something that appears as the tiniest blip on my radar even on my best days. The attention drawn to my chair by others is always there during the day when I'm going about my business. On a usual day I've grown to be able to keep that attention faded to the background; unless someone comes up to me and starts a conversation about it or why I'm in it - the stares and points (on a good day) pretty much are a non-issue and remain as standard as traffic lights that dot the scene of my day-to-day environment. The light changes color and I move along: nothing fascinates me about this interaction, and it's something that I just expect to happen.  We all know it will happen.
But like I said, even on my best days, even on days when the fact that I sit in a wheelchair is something in the background - it is still there in my mind. I can't avoid it and it's not something I have the desire to avoid either, that route just seems pointless anyway I look at it.

Still though, it can be tiring. It's tiring to wait for someone to come help me get un-stuck from a snow bank because the curb cut is not plowed. It's tiring when I sit in this one position all day. It's tiring when finally I think I have a minute to myself when a gaggle of kids on a field trip are all gawking. It's tiring when someone thinks they're being so original with their car-related comment i.e. "you'll get a speeding ticket!" "Has that passed inspection yet, where's your sticker?" "Don't drink and drive!" "Do you have a license for that?" It's tiring to hear about how Sally's grandmother has the same chair as me. All of those things are tiring to deal with which is why usually I don't. My eyes typically glaze over and I nod, and I smile but really I am doing anything but paying attention. I don't really allow myself to think about how annoying the chair is, because I know that it's not the chair's fault. But there is a part of my thinking that says there are too many irritants out there to 'deal with' one by one - and the chair is just one thing... and if only I could change that. But I can't.
The most that I have figured out to do is learning how to not let those irritants get the best of me. I relegate them to the background noise of my day, sometimes with significant effort and other times with as little as a shrug and a smile.

The best that I can explain being out of my wheelchair as being my favorite part of the day... would be to compare it to when I take out my hearing-aids at the end of the day. Some of you might be hearing-aid users and others not so I'll do my best to explain:
Hearing-aids serve to amplify the sounds in your environment. Depending on settings and personal hearing-loss they might be amplifying higher pitches or the tones that might be lower. There are hearing-aids that focus on individual voices, those that can block out the background noise of a heater or a classroom fan - but still, these noises are amplified to the wearer.
For me when I first take out my hearing-aids there is this immediate vacuum of silence that rushes into my ear canals. And it is the most relaxing noise for me, even more so than the sleep machine app on my ipad that makes waterfall sounds. That shush of every sound in my environment creates a stillness to the end of my day that I appreciate (particularly after stressful and busy days!)
What I'm experiencing when I take out my hearing-aids for those few seconds or minutes is an adjustment period. My ears have just been pummeled with amplified sounds for 9-12 hours of the day and suddenly everything seems muted, it is bliss I tell you! Then my ears will adjust and I will begin to hear my environment again at my usual hearing-loss-level decibels.

But that is what being in my wheelchair during the day is like, and then being out of my wheelchair at the end of the day. During the day my wheelchair amplifies itself to my environment, making it and my differences known to those who have the urge to take note of it however they choose. At the end of the day, when I am out of my wheelchair again, there is a certain silence to the attention it brings - it is in the absence of it. 

1. Seat belts
They are a great thing and I always have mine on unless I'm in a parked position. After too many accidents of falling out, or nearly falling out I have become a paranoid constant seat belt wearer. (The fact that I am always zooming off somewhere means that my seat belt wearing has literally been a life saver.) This also means that I am always looking for where it is! It drops between the wheels and the seat. It becomes tangled in the spokes. It drops in the crevice behind the seat. Somehow it has become wrapped around the metal handlebars. And my hand is always reaching for it in all of the weird spaces, jammed in somewhere that I'm pretty sure the manufacturers never intended for me to cram my fingers into.

2. Jammed fingers
When not in school or at work I use a manual wheelchair. It's easier to get around in places that might not be accessible, and also it collapses easily in friends' cars. Manual wheelchairs are great! And I particularly like when I switch from my power wheelchair to my manual because I feel more.. human in it. I feel less like a robot or a transformer. With that said though there is one gripe I have about a manual chair: because it is something that I push myself in, I frequently have jammed my fingers into the brakes. Usually this is because I haven't fully released the locks yet, or because I'm just not (as usual) paying attention to what I'm doing with myself. But ramming my thumb into the brake mechanism is probably one of my most frequent injuries in a manual wheelchair.

3. When it rains it soaks
People who are not wheelchair users just get their outer-wear wet. They can take off their jackets, their hats, their shoes etc and feel dry within minutes. Wheelchair users however have the joy of sitting in wet cushions, or against the back of the seat as raindrops casually drip down it. Let's not forget the armrests that collect puddles of water, the little pool that is only waiting for my elbow to carelessly rest into. Most of the time I have been lucky to find a bathroom that has automatic hand dryers that I just chill underneath the nozzle for a bit... otherwise it leaves for a very very long day.

4. It's not their arm rest, elbow rest, bag carrier, good-deed-of-the-day etc.
Unless otherwise requested or given permission, none of those things applies to anyone else except for the one in the seat. It has gotten to the point where I have no qualms about moving forward when I know someone is leaning on my chair (and the person didn't ask beforehand.) The other piece of this is that unless requested - do not rush (and assume) the person in the chair needs your help. There are reasons for why wheelchair users are super protective of their mobility devices. Would you want someone rushing to touch your legs and untangle them for you every time you tripped? Probably not. That's a little weird to have random hands all over your limbs. It's the same boundary concept; the faster non-wheelchair users get that line drawn in their minds the less tempting it will be for us to flatten toes at will.


Got others? Leave them in the comments section! 

It's that time of the year when many hope the clouds will have some kinda epic pillow fight and bring the flurries down. Everyone gets a little whimsical and rosy-cheeked-cheery 'round this time of the year, so to kick-off this December month I thought I'd make a list of things I'd ask for to help me get thru the snow. When I was a kid I used to ask for toys that I would dream up... what I'm saying is that part of me has yet to change. But hey if this isn't the time of year for hopes and dreams I'm not sure when would be more appropriate!

1. Seat Warmer.
I don't understand how this has not been invented yet!? Why can't my wheelchair seat have a built-in seat warmer? Don't get all science-y and technical on me for all you engineering tech geeks out there, just make it happen! The point is my buns get cold and while I love looking at the ice sculptures, I would like to do so without worrying that I might turn into one myself. (Of course after we get this figured out I would then like a seat massager..)

2. Salt Dispenser.
Every winter while my friends may be dreaming of snow days and hurling the biggest snow ball ever, I would have nightmares about getting stuck in a snowbank in the middle of nowhere. It would be awesome if my hubcaps could spray salt to melt away the snow at the press of a button! I mean think about it, I'm asking for a fairly practical thing right? At least I'm not asking my wheels to shoot paintballs or BB pellets. Or maybe I just want to adapt the technology from above and have heated wheels, that would evaporate all my nightmares!

3. Fuzzy Accessories Compartment. 
Without fail I will lose a glove and or a mitten this winter, and it's always just one of them. Also it's usually the left hand side of the pair (the one that I need the most because I'm a lefty, which means my left hand is always exposed to the elements to steer the joystick. My right hand is usually stuffed deep inside my coat pocket). Cars have glove compartments right? I want a compartment where I will, unlike most car owners, actually put my glove and scarf and hat in that compartment. It will also be a heated compartment so that every time I pull my fuzzy fleecy accessories out, they'll be dry and ready!

4. Twinkle Lights.
Because even though I can be kind of a Grinch during the holidays even I can appreciate the joy in twinkle lights. No ridiculous colors please, just the plain white ones - even the ones that dangle to look like icicles would be neat! No practicality here, I just would like the option of zooming by people in a blur of twinkling holiday lights.

5. Hot Cocoa Machine.
I would like a self-refilling thermos of hot cocoa hooked up to the back of my chair, and it must also connect to a holiday-colored x-tra long bendy straw. Maybe if you are on my 'Nice List' I will share some of my hot cocoa with you.

Clunky and deflated I felt gravity winning this tug-of-war as I seemed to hiccup along. My tire must have looked like the sagging jawline of an aging Muppet: the bottom of the tire jutting out with exaggeration, in stubborn protest of ever feeling filled with energy again. What is usually a smooth ride instantaneously felt as though I was on a creaky ferris wheel seconds from toppling over. I would ascend, jolt, bump, and clamber back down what was in reality only a few inches but what felt like I was experiencing rough turbulence on a transcontinental flight. It must have looked like a bumbling mess, filled with all the awkwardness of a baby taking its first steps without all of the drooling cuteness.

I was that struggle passersby clearly recognized needed help, but no one offered because no one knew how. Honestly, I didn't even know how.

My eyes scanned the brick paths of Harvard Square, searching earnestly for a path with fewer gaps and hungry maws of potholes or unleveled brick determined to gnash my careless tire, never to let it or me go again. The search was in vain as I felt my chair teeter-totter on a precarious point that was being desperately fought over by air and gravity.

I became desperate and began uselessly urging my joystick forward, trying to convey to the little mechanism you're not going fast enough! You don't understand! Come on, worrrrrk betterrrr-er-er! Since physical force was clearly not making a difference I resorted to mental telepathy:
Okay almost back to the dorms now. We're almost there. Just a little further and I can call campus security to pick me up in their van.

If I had been a less stubborn, less proud (?), less adamantly independent, less can-do-this-all-by-myself, and a whole lot less of the I'm-fine-everything-still-works .. I probably would have called a friend - any of whom would have been more than happy to accompany on the journey back to campus. But I didn't.

In my head I could hear my parents' voices fretting "Do you need me to drop off your manual wheelchair? I can come right now!" "Don't fall over! Who is with you? I'm going to call the school nurse." "This is why you need a personal care attendant with you all the time. Just imagine what you would do if you didn't go to school near home!" Of course that only encouraged me to continue plopping along.
Though it took forever and a day to get to the outskirts of campus, the slim area in which the college's vans would venture to pick-up students.. I finally made it. Sometimes the chances we take are irrational and not computed by the probability for injury, disaster, or total failure.

There wasn't really a life-changing, light-shining, earth-shattering point to this post. It was just to say that sometimes I'm willing to risk it and I get lucky. Something tells me there are moments when you do too.

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.

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! 

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.

Back before my memory was fully functional I belonged to an Easter Seals swim group. A group of kids with varying disabilities, a parent, and sometimes their siblings would get together once a week to swim and do water-related activities. It was really during this time that my love for swimming and being around water began. The staff and volunteers at Easter Seals were equipped and trained to work with multiple disabilities, the point, from what I remember, was to emphasize the therapeutic benefits of being in a liberating and "weight-less" environment.
And while I don't remember the specifics of this swim group, I do remember that it was one of the few times (if not only times) where I was immersed in a 'level playing field' with other kids my age who were also disabled. Some may have had tubes coming out of their stomachs, some may have also had O.I., others may have had surgical scars down their backs or arms, there were arms and legs that flapped uncontrollably, limbs that curved in every which way, necks that struggled to hold up heads.. but somehow, in the water, none of that mattered.

I remember that I was excited to go to the swim group each week. I looked forward to changing into my bathing suit at the Marriott Hotel where it was held, I couldn't wait for my mom to blow-up my Little Mermaid themed swimmies for my arms. I absolutely loved feeling free alongside them, with the other kids who, like me, couldn't conceptualize what it was we were so thrilled by - but we just felt it and through the bubbles we just knew what a difference being together in the water made.

Years passed and I grew-up, funding was cut, I fell out of my high chair and wound up in a body cast for half a year - several events led up to my slow phasing out of the Easter Seals swim group. By the time I was in middle school my parents were unable to find an Easter Seals swim program for me, so enrolled my older brother and I into swimming lessons at the local YMCA.
My parents understood the risks they were taking. The class would be taught by a YMCA staff person who probably didn't have any of the same training as the Easter Seals swim program teachers did, my parents also understood that the kids in the class would be 'normal.' I'm sure that they told me all of this and in my 11 year-old way of understanding things, I probably just shrugged it off not understanding the implications of what any of that would mean. In my mind I thought I go to a school with all these regular kids so what's the big deal with a once a week swim class? I found out soon enough.

"Okay everyone we're going to start off in the shallow end of the pool..." The instructor said. And with one hand along the wall the entire class began strutting down to the other end of the pool. I sat there on the pool deck, uncertain of what to do, and feeling incredibly vulnerable in too many ways for me to count. The instructor looked at me and asked if he could pick me up and carry me down to the other end of the pool. I shrugged and nodded.
For the rest of the lesson I remember wishing that I had more clothes on than just my bathing suit, wishing that my mother had been allowed to stay, shying away in terror into the corner when we practiced our kicks. When the class was over we had 10 min to ourselves for what was called "Free Swim." Kids jumped out of the pool, grabbed at kick boards, noodles, diving rings, and squirt toys and plunged after them.

"What happened to your legs?"
"How come it looks like you have two knees on one leg?"
"Why is your chest bone sticking out like that?" 
"Why did the teacher carry you?" 
Before I knew what I had gotten myself into a small group of kids had surrounded me. I hadn't come to class in my wheelchair. Hadn't been allowed to explain anything as I usually did at the start of a school year. I was just a kid, naked in a bathing suit - and O.I.'s classic symptoms stuck out like sore thumbs.

The point of this story isn't to throw more distance between the 'disabled world' and the 'normal world.' In fact it's to do the exact opposite! Those years (yes, I continued those YMCA swimming classes..) that I spent in those classes allowed me to literally grow tougher skin. Albeit it may have been somewhat brutal and a load of reality for an 11 year-old to handle, but it's something my parents could never have taught me because they're my parents. It's not something any amount of teasing from my brothers could have taught me because they are my brothers. In school kids are not as nearly naked as they are in a swim class, and I was usually always around the protective wing of an aide. It took total strangers, peers, and a level playing field that was provided by the water in order for me to truly understand what it means when I said to them:

"My bones are fragile, I was born this way but I can do everything you guys do as long as it's in the water. I'll race you to the other end?" 

The high school cafeteria swarmed with new and unfamiliar faces. Teachers milled about but only for the sake of being there because everyone knows that this is the place where every teenager is for him or herself. As a 9th grader I was a new student, but I was totally new - my family had just moved into town during the summer between 8th and 9th grade, I knew no one and more importantly no one really knew me.

I'm that person who gets visibly frustrated when my internet is being slow and a site is taking for-ev-er to load. Time and the ease in which we are able to do things these days is astounding; every parent of the 20somethings in my generation is quick to tell us a "back when I was your age.." quip, but it wasn't until recently that I realized the progress that has come over time on a more personal level.

One of the projects that I'm lucky to be working on involves research on the disability rights movement. Through interviews of those involved, reading articles, and collecting old newspaper clippings from the late 70's - I've been tracking a small piece of the disability advocacy work that went on in the state of MA. My research has led me to when that universal 'wheelchair' sign was first being introduced; I have newspaper clippings of when the words "...Society for Crippled Children..." were acceptably emblazoned across headlines; I have interviewed people who remember the days when buses were not accessible, or the days when there were no curb cuts -- anywhere!
During the interviews as I'm listening to people tell me what it was like "way back then.." I am almost ashamed by how willingly I've just assumed "well of course I should be able to do that!" Or "...obviously that's accessible, I mean why wouldn't it be?" And "Of course I can take public transportation, d'uh!" Not realizing that all of those things I take for granted were once non-existent and are now the product of an entire community who fought for a literal level playing field.

One of the individuals I interviewed is actively involved in public transportation access for Boston. During the interview he was telling me about a time when public buses were not accessible, and even further that the Greyhound (and other coach) buses did not become accessible until 1993. Immediately I had a flashback to four years ago when I stubbornly "ran away" from home to attend a semester away in D.C. I remember buying my one-way Greyhound bus ticket one night and the next day, to my family's dismay, boarded the bus and never looked back. There were a number of hurdles and personal barriers in that process of participating in a study-away program in the nation's capitol; but never once did I think to myself I can't go because it won't be accessible. As I listened to the guy tell me about the marches, protests, and demands that the disabled community worked for to get to the point where I was able to pursue my own independence -- I became extremely humbled by the movement's work and progress since the early 70's.

I now have greater respect for the components that go into my own goals of independence, but each decision and step I make towards that goal is now put into perspective for me: access is not just about getting in the building right here and now; access is also about setting the standards for future generations, so that those 20-something kids like myself can now go about our days zooming from point A to point B with the mindset of "of course I can do that!"

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.."

Although we may be in the minority and looked upon strangely, there are a few habits and tendencies of those in the majority that I find baffling. I am never sure how to respond when something like this has happened. Would I seem insensitive if I laughed out loud? Would I be rude if I simply said "seriously right now?" Or would I seem ungrateful if I said outright "you're an idiot.."

Regardless of what my response should or should not be, here are a few things that able-bodied people do that I find downright perplexing:

1. Taking the elevator one floor up or one floor down. Whenever I am in the elevator and I watch the able-bodied person press the number that is only down or up one floor I become the Staring World Champion. I hope the many holes I have bored in the back of people's skulls has had an effect on someone out there!

2. Fleeing or moving out of the way five feet in advance of my approach. It is endlessly amusing to me when people flee from my presence. It allows me to pretend that I've got such an abundance of power and intimidation in my overbearing 3ft, fragile skeleton presence. Or perhaps those are just the people who were never told that cooties don't really exist? You let me know.

3. "Your shoes are untied and I don't want you to trip." Wait.. what? As a wheelchair user who has a wealth of sarcastic remarks at the ready, my immediate response is always "show me how to trip sitting down!" While I appreciate the concern (they HAVE gotten tangled in my front wheels) but it's the urgency and alarm that I'm being told that my shoelaces are untied is what baffles me. Don't worry, I'm not about to launch into a marathon sprint any time soon.

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!

My first wheelchair was bright pink, rigid, and required human-power pushing. Call me spoiled or just technology dependent, but I now refer to all manual wheelchairs as "Flinstone rides."

The Quickie Zippie manual chair also came with a tray that screwed onto the side hand rests. I hated the tray. I used it throughout pre-school and early elementary school, but after the first grade it was phased out because I resisted it so much. My physical and occupational therapists tried every way to the glass-like tray to grow on me, even decorating the border with stickers - but I hated it.
First off it was so bulky that the tray wasn't something I could take on and off on my own. This meant that I could not escape my wheelchair without first asking an adult for help. Secondly, I didn't like how the tray separated me from my friends and classmates. When the class was doing an activity at a table that was too low for my wheelchair, or too high, or if it was an outside activity - the tray would be put on. Though at the time it was meant to serve as an accommodation, in reality all it seemed to do was put a physical barrier around my already existing bubble. Lastly, the tray also made it difficult for me to push myself. The sides of the tray attached to the handle bars and the extra bulk on the sides made it challenging for me to maneuver my chair; in short I felt clunky and useless.

Right before I entered middle school my parents, physical therapist, and orthopedic doctor decided I should get a power chair. Middle school would mean longer distances between classes, heavier back packs, and keeping up with my ever growing classmates. My first power wheelchair zoomed over grass, dirt, bumps, hills, and all the other terrain that I hadn't yet experienced on my own. I loved it and so did my friends who often jumped on the back during recess. Needless to say, this first power wheelchair got me hooked on the independence that power wheelchairs brought into my life. Though it may be odd for me to note this, but the biggest difference was that I had to train my right (non-dominant) hand to do things. Since I no longer required both arms to push, I quickly found how much I was able to get done with one hand free. In gym class I was better able to dribble the basketball, in art class I didn't need my friends to hold my drawings for me, at lunch I could throw away my own trash... these were the small things in everyone else's day-to-day routine that I was beginning to see that I could do on my own!

5th Grade

After high school I got my second power wheelchair. The thought here was that I would soon be venturing out into the real world, living on a college campus, and would need a chair that would allow me to be as independent of an adult as possible. This was when I was introduced to chairs that gave me height. Having mastered as much of the "2-d" plane on wheels as I could, I entered into a world where I no longer had to perform a circus act just to see the top of a kitchen counter. With a push of a button my chair would rise nearly half a foot, giving me an added 6inch height. Trust me, for someone who is exactly a yard stick tall - that's quite a difference!
There's more than just being able to reach higher on shelves, or being able to push the buttons on a vending machine. The other aspects of height include eye contact. I think that this was the biggest difference in getting a wheelchair with elevation abilities: no longer would people feel the need to 'look down' at me (even if they weren't figuratively doing so). And on that note, I also would no longer hear as many knees cracking as teachers or other adults knelt down near me.

Current chair getting new tires

My current wheelchair is a Permobil C300 and my last power chair was also from Permobil as well. I've been thrilled with the company as it provides great usability, durability, and the chairs themselves last quite awhile. Though I do have a new Permobil, my older one still works and it's handy to have a back-up just in case anything goes awry.

But when it comes to trays... despite having a "cooler" tray that collapses to the side and I can put on and off on my own - I still would prefer not to deal with the hassle. In lecture halls many desks are attached to chairs and sometimes I am not always good about making sure that there is a wheelchair accessible desk already in the classroom. Instead, what I've done is I turn the chair around so that the desk is facing me and find that it has worked well for my chair's height. This is also handy because since the seat is empty I can use the now empty chair that faces in front of me to put my books, backpack, or binders that I don't need.

As a gadgety nerd I am continually fascinated by the new technology that wheelchairs have these days. I have heard of apps on smart phones that will allow wheelchair users to control their chair, chairs that are able to climb stairs, and even chairs that have back massages and seat warmers! ... Okay, so that last thing is really just a chair that exists in my fantasy world... but still.. a girl can hope!

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?? 

I don't consider myself to be any different from my friends. I think like them, I feel as they do, I am able to have the same life style as they have etc. Except for one way I know that I am drastically different from them -- alcoholic intake.
I am not as tall as they are, do not weigh as much, do not have the same sized liver, and oh yeah.. I'm fragile. This makes my alcoholic intake and general drinking experience to be somewhat different than that of my friends. Ever since I started drinking ahem, legally at age 21, of course..I've been trying to put my finger on what alcohol does to my body. My first drink was something fruity and tasted more of cranberry juice than alcohol, it probably had some stereotypical girly name (but god no it was not pink!) But it was one of those sneaky drinks that doesn't taste like alcohol, so you keep drinking and drinking until

BAM! That would be the sound of my wheelchair into a wall.

I can't ever do shots. Believe me, I've done them before and in my mind it is like sticking a hot fire brand down my throat, whirling it around and then forcing it into my stomach. Within seconds my brain and body are in completely different universes and I am floating just inches above my wheelchair's joystick, trying desperately to steer correctly but always missing -- kind of like when you watch a 3D movie and when you reach out your fingers are just grasping at an illusion.
Wine? Wine tastes like an explosion of fart on my taste buds. I hate it. And will force myself to drink it only when I have to pretend to be "mature" and somewhat adult-like. Also, if there is cheese around - that makes wine drinking absolutely acceptable. But honestly most of the time I will opt for a flavorful beer (Blue Moon, anyone? Or perhaps an Allagash White? Or in the spirit of fall Sam Adam's Pumpkin Ale?) or some embarrassingly fruit-drenched cocktail.

All too often and quickly the alcohol will tend to go straight to my head. Which is confusing to me because at the very same time I will feel the emergency world-is-ending urge need to pee (and god help the person who is using the wheelchair-accessible stall in these instances!). It's like there is some vertical tube that runs from the top of my skull to the bottom of my bladder, and when alcohol hits my lips it forms an immediate funnel whose sole purpose it is to slosh the liquid around in that tunnel until 2AM or when my head crashes on to the pillow.

For someone who has a tendency to over think, over work, over analyze and be stressed out about everything simultaneously -- my friends often tell me that having a drink would do me a lot of good. "Sandy, live a little. Relax. Everything will be fine." And there have been more than a few occasions when I forget that I am not the same height, weight, or size of my able-bodied friends. Suddenly the world, the walls, the floor, the ceiling, the faces of my friends will all seem to be buzzing - everyone will seem overly enthused and giggly, but by the time I've made the 5th trip to the restroom that vertical tube in me will have cleared out, and I'll have remembered: I'm fragile and no matter how much delusional fun I'm having, no amount of swishing chemicals can ever change my genetic make-up.