Showing posts with label accessibility. Show all posts

1. Forced Game of Musical Chairs
I'm not the Queen of England, I wasn't even the Queen of the invisible monsters in my childhood closet. But when I need to get from one end of a crowded restaurant, venue, banquet, club, dance floor, or just any space jammed with people - I feel like I'm the Queen of the World. And it is awkward and ridiculous because suddenly, this kid who can just barely get the attention of the city bus drivers, has got people dressed to the nines standing up and pushing in chairs so that I can get through. There are muttered utterances of apologies, polite head nods in my direction as men in suits stand up and scoot out of the way, there are shuffles of feet and rearrangements of furniture and chairs, mothers with toddlers clinging to them like monkeys to a tree pull strollers out of the aisles, the manager of the establishment presents me my place: Is this okay for you Miss? What am I going to say? "No it's not sir. It's absolutely not okay, I need to be moved to the western side facing the bay windows just as the sun sets. Before the sky turns purple and right after it turns pinkish." I mean I'm not going to lie here, that line has crossed my mind before. However I have not been snarky enough for it to leave my brain cells and leap out of my mouth. Someday, I hope someday I will be able to speak those words.

2. Not Remembering People
All over the city people remember me, or some version of me I should say. I have been recognized by my middle school gym teacher at a Home Depot that I was never at. Apparently I was also seen at a gay night club doing donuts with a drag queen on the dance floor; well, I would like to experience that person's night life one evening. Another time I was seen crossing the street and heading towards the State House with armed guards, and contrary to popular belief that was also not me. I am disheartened by the fact that the wheelchair is an excuse for anything, but I think in this case it is. At least in part. People see a small woman with dark hair (or in some cases I've been mistaken for a friend with blonde hair), in a wheelchair (be it manual or power) and scream across college campuses: "SANDY SANDY SANDY SANDY!" Only to realize that it is in fact not me but instead the Department Chair for the Humanities Department. That woman reportedly turned around slowly in her chair and said in a steely voice, "I am NOT Sandy." Well sheesh -- if only she knew how lucky she was for being mistaken as a young and eager 20-something! There is a certain PRESTIGE in youth, dontchaknow?
The only reason why this makes me feel a little guilty is because while people recognize me all over the city, I never recognize them. I'm sorry -- but most of the bipedal folks in this city are just not stand-out enough for me to click in my mind, oh yes! I remember exactly who you are from 12 years ago at that one event I never went back to again! I should remember people better, that's all I'm saying.

3. Unintentionally Scaring People
There are never window panels in the doors of bathrooms and we all know why this is, let's not be perverts now and make me have to spell that one out. So when I'm on one side of the door and someone else is on the other side of the door -- that other woman may not always be expecting to see what she sees. A door shoved in the half-shocked and half-flinching face of a woman sitting in a wheelchair, and that other woman is so surprised at the sight that she screams. Not in a blood-curdling way, but in a huge-jumping-spider-landed-on-my-nose kind of way. She always gives a kind of astonished yelp that I later tell myself was a sound made out of fear of potentially hurting me, and fear of not expecting what was on the other side of the door. I don't mean to scare people, obviously. As someone who doesn't like horror flicks and scares a little too easily I always immediately give a small "I'm sorry.." even though it is not warranted or necessary. When I was telling my friend about these incidents she had recommended that next time I should scream back! And I should say "aaahh! Aren't you that girl who screamed at me the last time?"

What can I say? My friends are pretty hilariously brilliant, right? Don't worry I will most definitely give a report back on all the details of what occurs thereafter.

4. When People Get it All Wrong
"Mommy what happened to her?" 
"She broke her legs sweetie.. don't point that's not nice.." 
Surprisingly most of the time this comment is made I have in fact NOT broken my leg, and nor am I even in any other kind of cast. I'm just being regular ol' me in my wheelchair minding my own business.
"Was she born sitting like that?"
"Yes she was, people are born in all shapes and sizes.." 
I don't know what kind of birds & the bees story they tell the iGeneration of iKids now, but I've never heard the one where a human comes out of the mother "...sitting like that.."

I feel bad when I make no effort to correct people, but not like totally bad about these moments because dang it I'm old school and kids should still be listening to their parents --- and buying all the white lies/BS that their parents tell them. They can grow up and struggle to figure out the real truths later on in life just like I did; when their little worlds shatter and they realize everything is not so plain and simple or easy to swallow at first glance - they can do that on their own. Or on the off chance they bump into me in the future I'd be happy to explain to them when they ask for help themselves.

5. Making Them Look for that Other Way
Whether it's on a college campus tour, museum, concert hall, colonial building, historical structure, apartment building, office building.. or whatever have you - there is at least a 75% chance that when I show-up there will be a need to look for the accessible path and entrance inside.
"Uhhh I know that there's a wheelchair entrance but let me just go check with someone else and find out where exactly it is." And then the well-dressed official in his/her uniform has to go running off, trying to find the path to the treasure in the quickest time the world has ever seen. I certainly hope they are trying to accomplish this in the quickest time ever..
You can see the embarrassed and blanched look on their faces when they realize that they, the authorities of the place, in fact are not all that authoritative and look incredibly clueless in this moment. The look on their face says well d'uh of course I should know where the accessible entrance and paths are, let me go vanish and find where it is and then by the time I get back she will have forgotten about my brief state of cluelessness.

Okay the truth is I would be really uncomfortable if I were them. I like to know everything, so any moment of cluelessness is really unsettling to me. So that's that.

If there were no stairs in the world it'd be a flatter place, but not in the same way Columbus had believed. If there were no stairs in the world the toy slinky would be a whole lot less fun. If there were no stairs in the world Mary Poppins would never have swooshed up or down the banister. If there were no stairs in the world, the great pyramids of Egypt would look staggeringly different.

If there were no stairs would elevators accommodate more? If there were no stairs, would Machu Pichu still be one of the seven wonders of the world? If there were no stairs, would fire escapes look like slides? If there were no stairs would an old house creak as much? If there were no stairs would bleacher seats be different? If there were no stairs, would dollhouses have fire poles instead? If there were no stairs would we all cannon ball into the pool? If there were no stairs would the stepping stool exist? If there were no stairs how would Cinderella lose her glass slipper?

If there were no stairs no one would ever say "go wait by the stairs." If there were no stairs you would never hear "I can take the stairs instead." If there were no stairs kids would never be told "don't try sneaking down those stairs!" If there were no stairs firemen would never say "use the stairs in case of a fire." If there were no stairs trainers would never say "sweat it out on the stair master." If there were no stairs fewer would say "sorry, it's inaccessible." If there were no stairs maybe fewer would say "oh I'm so out of breath!"  

If there were no stairs more people would know the thrill of racing down ramps. If there were no stairs more people would think about fewer accommodations. If there were no stairs, people might all enter and exit through the same doors. If there were no stairs universal access might be a little more universal.  

If there were no stairs I'd do a whole lot less problem-solving. If there were no stairs I wouldn't be carried around as much. If there were no stairs I might say "I can't.." less. If there were no stairs I could crash more house parties. If there were no stairs I wouldn't shop on-line as much. If there were no stairs my voice might not carry up the stairwell the same way. If there were no stairs I might not be as alone in a stuck elevator. If there were no stairs,

The world would be a less interesting place, and I'm a sucker for interesting.

Rarely do I ever write about something that is current in this blog. Usually I'm drawing from old memories, face-cringing injuries, or from the endless pool of awkward life events I have stored up inside this quarter-century body. Today something happened that made me smile so broadly inside that I thought my chest could wrap its flimsy little rib bones around the whole Earth. So I wanted to share it:

Just a side note: I don't like saying the word 'jobs' 'volunteer opportunities' 'internships' or 'the regular ol' 9 to 5.' Instead I'm more apt to use words like 'side gigs,' 'projects,' 'a chance at world conquest' or 'opportunities for mind blows.'

One of my gigs is at a tiny, and I mean so tiny it's currently run by one 22 year old woman, and a grad student - homeless prevention organization. Some of you know that homelessness has long been an intellectual curiosity of mine, and it has since moved far beyond the realm of the classroom to real-life action. At this tiny organization is where I get to experiment with those curiosities. And yes, it is just as dangerously thrilling as it sounds. We work with individuals and families who are either already homeless or on the verge of homelessness, and these days it is the latter that has seen a piercing spike in numbers. Due to the economy and difficult job market, thousands of people are struggling to find a job to pay for the mortgage, make rent, put food on the table etc. The swing of living pay check to pay check offers little to no stability for families caught in this momentum.

All it takes is a sudden sickness or accident and as many of us know - life gets turned upside down. Soon we are not only scrambling to afford the everyday living expenses but also medical bills, transportation to doctor's visits, child care, gas, medication etc. Unfortunately for many those everyday bills are oblivious to our other life circumstances. When rent is due it's due, very few landlords have the compassion or logistical ability to consider a very sick child, or the fact that the head of household has just lost her job. Soon these are the folks who find themselves staring down an eviction notice and homelessness. All of this happens within days, sometimes within hours.
At this tiny organization that began in 2009 we have since prevented homelessness for 300 families, and been able to raise $300,000. How is it done? What makes it possible? Sorry -- that'll have to be for another post. But of the sometimes 5-8 different projects that I've got going on, this remains my proudest mind blow opportunity. I love what I do there. And to be able to say those six words is something I know I am incredibly fortunate to utter.

This tiny organization is mighty. It matters to the community and city we live in. Because people and families believe that they can make a difference, and what a difference it has made! I am lucky to even be a part of it, to be a part of the journey's the families are all braving as they move forward towards their goals. Most of the time those goals are as simple as "we want our daughters to live in a safe neighborhood, to do well in school, to not live in the shelter system, and to be proud of their parents." Think about it, how different are we from each other? Isn't that what every parent wants at the end of the day?

You would think that would be enough to make any person's day bright. And it does make every minute of my day worthwhile, challenging, exhausting, stressful, and driven. It keeps me moving forward. Over the past year that I have been involved with this organization I have become close with the 22 year old woman who makes the entire ensemble happen. K is wise beyond her years, charismatic, warm, sensitive, resourceful, creative.. I could go on.
Sometimes I worry whether or not I am seen as 'capable' in the professional world. Does she really think I'm able to do this? Is she just going along with my crazy ideas because she wants to give me a chance to learn? Does she see me for what I am able to bring to the table everyday? These are questions that spew from my brain because there are often moments when I am uncertain about my own self-confidence; this is particularly true in the work place/professional world where I am only just beginning to find my footing and build a reputation for myself. Am I doing the right thing? What are the assumptions people are making about my abilities? How do I present myself as an independent-thinking professional who uses a wheelchair? ...The questions are endless.

Today we were on our way to lunch. Recently K had injured her ankle in a trampoline dodgeball game (exactly what it sounds like), and was hobbling around the office on crutches. I told her that we should just get lunch delivered but she insisted that we "just go around the corner, there's a restaurant I want to try out." So I shrugged and trusted her judgment of how much hobbling on crutches she really wanted to do and off we went. We got to the restaurant and K went to go look at the menu posted on the window, from the window I could see that there were stairs leading into the restaurant.
In my mind I assumed that K had planned this in advance. (I mean the woman runs a homeless prevention organization for cryin' out loud!) I assumed that there was a wheelchair accessible entrance somewhere around the back, or that there was an elevator in the lobby that I just hadn't seen yet.

"Okay let's go in!" She hobbled ahead and we stood at the entrance staring up at the flight of stairs. That was when I realized that it was happening again, and my heart began to creep into a slow smile.
"Umm is there a wheelchair entrance somewhere?" I asked.
K turned to look at me, eyes wide in total shock and perhaps slight embarrassment --
"Oh Yeah... I hadn't even thought of that!"

All those thousands of questions about my self-confidence in the professional world evaporated the second she admitted her oversight. When will I learn that people see me for what I offer and not for the wheelchair? Or maybe I should learn how to be selective in who I include in my life, or learn how to collect those individuals to my real-time on-going life stream of adventures. Something tells me that I probably can't learn how to do this in a book. I'll just continue doing what I've always done: give it my all in everything I involve myself in and let the rest settle itself. 

Since you spend your days a convenient just-out-of-reach-feet from the toilet, and your view of the outside world is only gleaned from the millimeters of space between the door and stall walls.. let me take a moment to tell you exactly how it is out there:

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.

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.