Showing posts with label accessible living. Show all posts

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.

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

In a previous post I had mentioned that there are a handful of things I wish I could do but I can't, for everything else I have figured out an alternative. Here are those 5 things:


1. Run a marathon. Well, I wish I could run in general. I'm a sucker for all things fast and speedy. But there is something about marathon runners that's incredibly dedicated and determined. To be able to say "I pushed my body through 26miles.." is probably something I won't be able to do any time soon.

2. Snowboard down a mountain. A lot of my friends snowboard. No, I don't want to ski - I want to snowboard. My friends make it sound cool and it looks awesome! Besides there aren't too many ways I can really enjoy winter and the never-ending piles of cold white stuff that we get here in the Northeast. To race down a mountain on a board, fly through the air while you're doing gravity-defying turns and flips, and then land upright (hopefully) -- what's not to love?!

3. Diving into a waterfall. I can't really explain this one but it's just something I want to do.

4. Climb stairs in my wheelchair. This would solve a lot of my day-to-day problems, not to mention it would make it SO much easier to hang out with my friends (most of whom are not wheelchair users). Not only are these special chairs way out of my budget but I also doubt my health insurance would ever say yes, climbing stairs in your chair would dramatically improve your physical health - we will buy it for you. Even if I did somehow manage to get one in my possession some day, I would probably still be paranoid of it malfunctioning in the middle of the staircase or something! What can I say? I'm suspicious of technology..

5. Stop breaking. This would be the ULTIMATE dream for me - but it's not something I've figured out how to do yet. I know, I know, we can't STOP breaking but we can do our best to prevent fractures from happening and strengthen our bodies so that fractures are not as frequent -- but don't we ALL wish we could just STOP already?!


For everything else that I have ever wanted to do that may have seem slightly ... impossible.... I have either just done it with all the risks & consequences in mind, or I have been lucky enough to find an alternative. As someone who is an adult, my capacity to "just deal with it" is a lot greater than when I was five years old, and unable to "deal" with not being able to run around with my friends. There isn't an easy answer to teaching kids that unfortunately their disability is limiting in some capacity.


(Major bonus points & automatic friend for life if you message me telling me how I CAN do one or more of those things).

Tips on "getting over it" :

• Instead of saying "You can't" it's less harsh and less definitive if you said "I'm not sure..." or "I don't know..." 
• Don't bullshit. At a certain age it's appropriate to cover things up and say "well you can't go on the Superman roller coaster but the kiddie one is just as fun!" But after a certain age we all know that's just not true. Being honest and owning up to the facts and reality builds on a younger person's ability to cope. "I worry that you might get seriously hurt if you went onto the 'bigger' kids' rides.." is legitimate, honest, and also introduces the idea of consequences
• Personally I have 'gotten over it' by finding things that only I can do well that other kids aren't able to do as well. These are things that I am passionate and interested in, practice a lot of because I enjoy doing it, and have found my own 'thing' to hold over other peoples' heads and have THAT be out of reach for THEM
• Allow the time and ability to express how upsetting it is to not be able to do something. Brushing it off and moving forward too quickly is just another way of 'covering things up' and it will feel like you are not legitimizing a young child's feelings or dilemmas

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.

"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. 

Tonight O.I. will be getting a rare mainstream spotlight on ABC's Extreme Home Makeover; the season finale features the Sharrock family with a young boy who has O.I. Atticus Shaffer from The Middle who also has O.I. will be helping along as well!

As I'm waiting to watch the episode I'm remembering what it was like when my family moved into our current home. We were very fortunate to have parts of the house built to not just 'wheelchair accessible' standards, but to my own standards. Many of you probably experience the frustration of places that claim to be wheelchair accessible, many folks don't get it when you're struggling with getting around tight corners or reaching to open a door. That is one of the gripes I have with living a disabled life: we're not all the same (just like other labels society gives to other individuals).
But I didn't always have a shower head that was 4.5ft from the floor, a sink that was lower, mirrors that angled downwards, or a fully soft carpeted home. I wasn't always able to navigate in and out of the house easily with a wider door that opened out, a smoothly paved driveway and a lower garage door opener panel. These accommodations had to be planned for, measured and worked around. It took the foresight of my parents, the patience & brilliance of architects, and my own creative thinking.

Things to Consider: (for either a home or a dorm room)

• Keep pathways to exits, bathroom, and bedroom as straight-forward and as clear/open as possible
• In the main living area keep in mind furniture placements that will be easily move-able for wheelchair access 
• Have medical necessities (splints, casts, braces etc) in an easy location for anyone to get to (friends, emergency personnel, etc)
• Book cases and shelves should be firmly mounted to the wall or floor
• Keep heavier objects at a height that allows you to carry it while in a safe position (not reaching down or reaching up)
• Racks that would otherwise hold keys can be used to hold jackets and other clothing at a lower level
• The handy-dandy grabber stick (you know, the thing that opens and shuts like a claw with a clamp. The thing that I used to play countless pranks with in college..)