Showing posts with label wheelchair social interactions. Show all posts

Maybe it bothers me because I am not comfortable with my physical self, not completely anyway.

Although I have written before about what I would like to tell that other person who is staring at me, and what I actually do tell that other person who is staring at me - I don't think I have written about why exactly it bothers me. So that's why I started off with the sentence that I did, just to .. you know.. get it out of the way, and to just put it out there first.

When people stare at me I feel wrong and out of place. Let's be very clear right now: It isn't that I don't like knowing that I am different (and that others notice that I am different) - because that is not the same as feeling wrong. In my opinion feeling wrong is a much worse feeling than being different.

Being different isn't really something that is new to me. I have more or less always known this and it's just what my life is. It hasn't always been easy, but at the very least I have always known what I am getting myself into when it comes to being different. I've had at least two decades worth of practice at being different, and probably many more years of it to come! I have had practice at figuring out how to be different, how to enjoy being different, how to be comfortable with being different, how to fail at being different, how to find others who are also different.. the list goes on. What I am trying to say is that I have had the privilege, and support around leading a lifestyle that is different from the majority. And on most days I am fine with it.
But when it comes to feeling wrong because someone is staring at me - there isn't always something that I can do about it...other than to sit out the feeling. Wait till that person continues walking on. Wait till they stop staring. Wait till I get used to something that.. honestly.. I wish I didn't have to become accustomed to. Or just ignore them - but that feeling, at least some residue of it, still leaves even some tiny tiny trace of it inside of me. I can adapt to being different, but I haven't always been great about adapting to feeling wrong. In fact I don't even know if I ever will be able to!?

I know, I know, I know that when people stare they don't usually intend to give off the impression of making me feel wrong. And because I like to give people the benefit of the doubt, I am sure most are just curious and maybe if I stopped to say "hi" the majority of those who stare at me are probably very nice! But that doesn't change the fact that initially they still make me feel wrong. Like one of those pictures little kids work on that ask them to figure out "what doesn't belong in this picture?" And usually in instances where I am being stared at the answer is always: me.

Here's why I think 'feeling wrong' when I am being stared at is not a reaction I want to be having:
When my friends who are also young women (without a readable disability) are being stared at, they do not feel wrong. Some of them feel like they are being wronged. And others feel like it's something of flattery or a compliment, a positive thing! But rarely have they ever commented on their individual selves as feeling like the error at fault.

To get back to where this post began: maybe it's because I'm not comfortable enough with myself in a physical sense, that I feel wrong. My lifestyle of being different has lead to many failures, but also one of some success. There isn't anything wrong about being different. It has been challenging at times, but never wrong. I have yet to find that similar sense of accomplishment in my physical presence in a way that makes me confident and proud of it. Certainly it isn't measured by the relationships I've been in, or even the dates I go on. It's not really found in how many laps in a pool I can do. It's not in way that I can ambulate myself around the house without my wheelchair.

I cringe because there are no answers in this post. I'm not sure where that feeling of righteousness will be found, but I'm pretty sure that continuing my lifestyle of being different will get me there sooner or later. Damn I sure hope so.

I decided to put together a list of phrases/incidents where my friends and myself have said and thought to ourselves, "gee that person just makes us look bad as someone who is disabled.." or "that person just makes us look like we're just a lazy bunch of disabled people.." 

The person we all know who is content to just live on disability checks..for like, ever.

The disabled panhandler that makes it a point to ask us our name, and calls out to us every time we are within five yards so it appears like we are best buddies to everyone on the block. 

The person who fought a little harder for what she wanted whereas we decided we were fine with the status quo. 

The person who is comfortable and totally chill talking about sex in public, to a non-disabled majority. 

The kid who refuses any pain medication after surgery, the same surgery we whimpered about for weeks. 

The person who didn't just brush off a minor offense, but made it a point to get his message across that that was in fact not okay. 

The person who is a medal-ranking Paralympian, motivational speaker, book writer, triathlon athlete, and then in their spare time they also just happen to be helping their aging parents through claiming their own disability. 

The kid who is standing-up against bullying when at that age we may have just accepted it, or even participated in it as the ones who were bullies. 

The young person who has the guts to tell their family "peace-out yo, I'm moving out on my own." 

The person who bravely reported that their Personal Care Attendant was abusive. 

The individual who worked with their physical therapist for just a little longer so that she could then one day walk without mobility aides. 

The person who told their family members, "no you can't just use my handicap placard whenever you feel like it anymore, especially when I'm not even there."

The person who took their time around the school race track even though they knew it would take three times longer, because we may have preferred to sit in the shade and 'help record times.' 

The person who decided to not use their disability as an excuse, even if that would have been 'easier,' more socially 'expected/accepted,' and even medically condoned. 

The person whose life-style and life-stage most closely resembles the life-styles & stages of their non-disabled counterparts. 

Don't kid yourself, we have all done it I'm sure. We've all compared ourselves to one another. That's the nature of being in a community, and a part of the process of getting to know one another; it's almost necessary I think, to question and think about the impact that others' actions might have on our own perceptions of ourselves, or on the community at large. I think doing this is somewhat healthy because it keeps us in check, it keeps us critical of one another - and most importantly of ourselves.

Recently my friend M asked me if I preferred to be smiled at, or to not be smiled at by passersby. He went on, jokingly: "when I pass someone in a wheelchair - do I smile with teeth? Without teeth? Do I nod a little? Do I say hi? What do you prefer people do?" As the guy whose idea it was for me to begin this blog, M is hardly ignorant to the fact that I cannot be the spokesperson for all people in wheelchairs. With that said, I also recognized that he was asking out of genuine awareness of his surroundings and of others.

My gut reaction was to laugh at him (actually I did laugh at him), but also to say "I prefer that people do to me whatever they would do to anyone else they passed by on the street." But I knew that this isn't the way the majority of our society works, no matter how much I would like to wish that it does. It just doesn't; and because of that I also knew this would not be a sufficient enough answer for him, or for me. The fact of the matter is that a person in a wheelchair typically draws attention, for one reason or another. Once that attention is drawn, by the unspoken actions, social etiquette, gestures, etc, well there is a lot that we can do with that attention. What we do with that attention can be quickly manipulated into something that can be taken as negative, or something that can be taken as positive. Here I will try to differentiate the two:

In my mind, whether wheelchair-user or not, smiling at someone you pass by is just something friendly people do. Despite living in the city all my life, I have been the recipient and giver of many smiles to folks I will only see for .0008 seconds. But what's beneath the smile? It also is an acknowledgement that you and I are in this same space for just a moment. I am acknowledging that the other person is someone to be treated like a human being, with respect and courtesy. I am also saying: I assume the best of you, and you should assume the best of me.

But again, the majority of our society doesn't function in the realm of Sandy's-fantasy-fairy-tale-land. I'm not sure that everyone who smiles at me is assuming the best of me, no matter how high of a pedestal I may have put them on in my head - for those brief .00009 seconds we saw each other.

When someone says "hi" to me I always say "hi" back. This isn't just because I was raised this way, it's because, I think, in some ways I am proving to that stranger that I will probably never see again - that I am not only a human being, but also capable of normal social interactions. Maybe this stranger wasn't sure I am able to communicate, maybe this person wants to be my next partner in crime, maybe this person is just saying "hi." And 96% of the time the latter is usually the case. The other 4% of the time people will force this opening wider and launch into it: "Can I ask you a question, I was just wondering..." (And that's the subject for another blog post).

If people don't say "hi" to me, or they don't smile at me, or even look in my direction -- I'm not about to go give them the hairy eyeball at the back of their heads. I will just assume that the individual is busy, or lost in thought, or in a hurry, or just isn't that kind of person. I am not offended and don't think any less of the individual, the person is just one of another hundred human bodies I will pass in my day. The other angle on this issue I brought up to M was that location matters. Where you are in the country, or in the world(!) makes a huge difference in terms of what is socially appropriate behavior when two strangers pass each other by. For instance: people are nicer in D.C. than they are in Boston or New York City. Getting a "hi how are you?" Is not uncommon in D.C. Getting a "hi how are you?" in Boston or NYC is almost borderline creepy.

Can we get back to Sandy's-fantasy-fairy-tale-land? Just because it doesn't exist right now doesn't mean that there's no hope of it ever coming into reality. So why not? Why not make eye contact with strangers? Why not just smile at people? Why not assume the best of one another?

A couple weeks ago I was proved wrong, and though now that I think about it - it shouldn't be a complete surprise that I was wrong. Nevertheless the moment struck me in a jarring way, so much so that seconds after it happened I thought: this is totally blog content material! So here we are:

Earlier that evening a torrential downpour had taken many by surprise, especially this population of young students - many of whom probably checked on weather.com and seen that 10% chance of Precipitation. No one was expecting there to be rain, much less thunderstorms that my friend had compared to "monsoon season in India.." as he strolled unflinchingly beneath pelting raindrops. I held my umbrella, no - I gripped it in my right hand, tightening my fist every time lightning flashed as I tried to prepare myself for the thunder to follow.
From (too many) previous experiences, I have learned to always keep an umbrella hanging from the back handlebars on my wheelchair. "You're practical.." he had noted. I shrugged and nodded, I probably went into some rambling description of how getting wet doesn't bother me, it's the sitting in a wet chair that bothers me. It's the feeling of your underwear clinging in all the wrong ways to your skin. And the way the raindrops slip into the collar of your shirt as it treks down the back of your seat, and then it all stays there like a slow waterfall, building and pooling around you. This is most noticeable when you go to rest your arms on the arm rest and find it wading in a puddle of fallen sky. By then we'd reached the subway station, got on and went our separate ways - and I thought to myself: one can never complain about too many new friends, especially observant people. There are not enough observant people in my life, I decided.
When I got to my stop I waited outside the bookstore for the van to pick me up. I watched how the new students seemed particularly keen on watching where they were going. Old students were content to lose themselves inside earbuds, or glared angrily at the new students who were walking too slowly towards their Friday night plans. New students clung to one another in packs, their eyes reflected the shine of their new environment. Returning students saw their future, they were already looking forward to May or thinking back to sun-soaked summers.

"Hey, do you need any help?" An older gentleman asked me.
"No I'm all set, thanks. I'm just waiting for someone" I responded. I saw wisps of silver hair poking from underneath a baseball cap emblazoned with a white H against a deep crimson background. He was wearing a dress shirt and khakis, just about to cross the street when he turned to me.
"Well, keep up the good work. I give props to you, keep doing what you do!" That was when I saw the CVS bag hanging on a silver hook, where I had expected his hand to be. His other hand hung by his side.

Wait what? I thought to myself. What good work am I doing? Shouldn't you, a fellow person with a disability know better than to say that? Why are you giving me 'props' for doing something as simple as sitting and waiting? I was shocked. Silenced. I could only stare back at him, one eyebrow arched questioningly,
"Uhh.. okay." And then the neon signs had switched, and the gentleman had 35 seconds to cross the street.

As I sat there waiting I came to realize why I was so bothered by this brief exchange. Yes it was the condescending words, it was the wildly wrong assumptions he was making, it was the wildly wrong assumptions I was making.. but most of all I felt slightly insulted because this gentleman had behaved contrary to how I had categorized him to behave. He had treated me as if he were not disabled. As if he did not know how irritating getting praise for sitting and waiting, for simply living my everyday life would be.
But just as I think he was in the wrong to have said what he said, maybe I am also in the wrong to have assumed he would fit inside that square peg that I assume he belonged in.   

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.

One of the reasons for why we adamantly and anxiously protect our right to speak is because it is a means of validation. It validates our identity as independently thinking beings, it acknowledges that we are capable of expressing our thoughts/beliefs/opinions, and it allows us to 'own' the notions that drift in and out of our heads. Rather than launch into some politicized verbal-vomit on the right to free speech, I'll take you into a life memory:

She gave me a quick .005 second glance, looked up at the clearly taller adult male figure standing next to me and proceeded:"What grade is your daughter in?" The woman asked my dad.
Sitting in my wheelchair next to him I watched the verbal table tennis match carry-on over my head. The serves and spins each side took were happening too quickly for me to jump in and interfere. The woman began shifting her eyes from me, and then back up to him. I could feel my dad gripping and twisting the foam handles on my wheelchair. His frustration under wraps, he hid it well. I held my breath uncertain of how the match would unfold, but silently pleading for a Team Dad win! In a matter of seconds it took only a slight tap of the ball for my dad to send his final, and victorious serve to the other side and catch her off guard: "You can talk to her, she's 19. She's an adult now." My dad responded, with a good-natured smile.
"Oh! Okay!" The woman quickly replied - simultaneously her eyebrows raised, and her neck jerked back in disbelief. She then knelt down next to me with audible crackles in her knees, the sounds of defeat and a polite gesture to the victor.

This is not some bizarre phenomenon that rarely happens. It's a fairly frequent occurrence, and happens regardless of who I'm with! Surely we can agree, no matter where we stand on our rights or freedom to speak, that the above incident is totally weird - right?
My dad was right. I was 19 at the time, and I had become an adult. But being a legally-recognized adult wasn't the reason for why the woman should have directly asked me her question. She should have asked me because I was capable of speaking for myself. I was more than capable of answering her question. And because the question was about me, not about what grade level my dad was in.

For awhile my parents, like many parents of young kids, spoke for me. They told people who I was, what I liked to do, what I could or could not do, what I needed etc. But it got to be a certain point where I began to figure some of those things out for myself - and it validated my progress as a maturing individual to be able to express my own ideas on those things!
After that point whenever someone answered for me, (be it friend, sibling, doctor, classroom aide, parent, relative..) it took away the life experiences and conclusions I came to for myself. Over my head they answered for me, and down below this is what I heard: whatever you decided doesn't matter. It also told me: you should expect others to speak for you, you can just sit back and let them do the work. It said to me: whatever people say for you is the right thing for you. In a literal way it blurted out: you can't have these conversations because they are literally above your head, out of your reach. Whether people intend to imply these things or not, through their manner of communication, isn't what's important here. It's the fact that internalizing those implications were tough for me to first accept, then reject, and eventually find solutions for this bizarre behavior.

"Well actually, I just finished 13th grade." I responded to her wide-eyed puppy dog face. After hearing my answer she looked puzzled. I decided to cut out my smart-aleck answer and said:
"I mean that I just finished my freshman year of college."
"Oh, okay. I get it now." Gone was the look of shock and disbelief from her face. All that was left was a blank-slate, the groundwork for mutual respect and understanding.

Forget the dictionary definitions, and that goose-bumps moment you get after hearing a motivational speaker, or seeing a moving piece on a local hero on the 10 o'clock news. I want to know what it means for you to be inspired; what does it mean when you cross paths with someone inspirational? Here is what it means for me:
When I am inspired it means that I am encouraged and motivated to try harder. It means that I believe in myself a little bit more than I did a few minutes ago, it means that I have just witnessed an example of someone else trying harder - and the outcome of what that led to. It means that I have just been lucky enough to add another instance of possibility to my archives of possibility examples. So when I flip back into my brain and come across the word 'Inspire, Inspirational' the little card in my mind reads: Please see 'possibility' ... and then like a Google search hundreds of hits on moments, images, individuals, and life experiences pop-up in my mind.

I know, your first thought is "ummm lolwut?" The wording of this title is probably not one of my brightest and shining moments, but this is an awkward topic for me - and as such I am going to give it an awkward title.

My friend D exited the mall first, she propped the door open with her wheelchair and called behind her:
"Ya got it?" I answered "yeah!" And then zoomed out, but I didn't get far before there was a startled "aahh!" Yelp for help behind us.
D and I quickly spun around and I looked in horror as the door was just about to slam into our friend K. In the time it took me to realize what I should have done, D had charged forward and held the door open - but not before she hollered,
"Sandy clearly doesn't know how to have disabled friends!"
"Hey! I'm trying!" I protested, feeling somewhat embarrassed and extremely defensive.
"You supposed to hold the door open for the next car in line..." my friend K said to me afterwards.

Although I know D said it with sarcasm and humor in mind, her words did ring true for me. Because after all, (and don't tell her I said this) but D is usually right.. it wasn't until recently that I began hanging out with a crew of other O.I.'ers and wheelchair users.
Let's admit it right now: Just because I am disabled doesn't mean I know how to treat other people who are disabled. This has been a somewhat contradictory concept for me to wrap my mind around. I mean, really, how can I not know how to treat other people who have similar perspectives and views from their wheelchairs?

Never mind wheelchairs or just O.I. - let me give you another example:
One of the projects I'm working on involves participants with a wide variety of disabilities: hearing-loss and deafness, autism, learning disabilities, visual impairments.. the list goes on. As I'm meeting with some of the program participants I am sometimes uncertain of what help I should be providing, and or what assumptions they have about the help I should be already giving. For instance - as I navigated the office with a partially blind program participant, my wheelchair turned on a dime around the awkward column that stood in front of a door -  I didn't take into account that her guide dog was not a machine, and isn't going to respond in the same way. Or as I spoke over the phone with someone who was hard-of-hearing it slipped my mind that I cannot speak in my usual rapid-pip-squeak-motor-mouth manner. I cringed my face as she said to me,
"I am hard-of-hearing and I need you to tell me your email address again slowly.." I thought to myself d'uh I should have realized that! She did, after all, list that on her application..I face-palmed myself at my desk. So I began again, patiently and clearly... "S as in September.." 

Maybe it's because I need to be a little less self-centered, maybe I need to just become more comfortable accepting help for myself, perhaps I need to get used to the idea that just because I do not feel comfortable asking for help - doesn't mean everyone else who is disabled feels the same way.

A large gnawing part of me wants to say, but having friends who are disabled doesn't mean anything different than having friends who are not disabled! And this is true. But in the same way that I am sensitive to any one of my friends who may have had a long day, a bad day, an upsetting problem, or even something incredibly amazingly awesome-sauce he just wanted to tell me about -- I accommodate accordingly, and try to respond to those situations as helpfully as I can. Maybe it would be easier for me to think of it outside the terms of disability, and more in terms of: how can I be a good friend? To me that person is my friend first, and a person who is disabled second.

So often when I get frustrated because someone hasn't pushed their chair in, or because someone has mistakenly placed an orange cone in front of the curb cut - I am frustrated not because of the lack of accessibility and accommodations in that situation, but because there was clearly a lack of common sense that went into that action or gesture.

So let me try that out a little more and make that the forefront of my thinking, rather than how can I help this person who is disabled - we can all be comfortable with common sense, right?

I'm just going to go ahead and make the assumption that you, dear-questioner-of-my-walking-abilities, has no concept of what "little" actually means. I'm so glad you asked because I'm more than happy to explain!

Little isn't something that can really be measured in inches or feet, so much as it is lived in years as someone who is a mostly-functioning 3ft tall adult. Little isn't something that can be sized up in your weird corner-eye glance, it's something that needs careful scrutiny on an x-ray for that tiniest sliver of a fracture. Because that tiniest sliver can actually be causing a very big pain. Little isn't something you can purchase and wear when you buy clothes from Gap Kids as a college student, it's just a paradigm and a frame of mind that we decide to put on ourselves. And just trust me on this one - this frame of mind isn't really a one-size-fits-all garment. Actually, you need to be a very big person to understand what "little" really means. It's kind of like how you need to experience sadness to understand what happiness is all about. Get it?

The first time I walked I was around four years-old and had already read my first beginner's chapter book: Amelia Bedelia! As I stood between the metal railings, feet planted in "proper walking position," legs strapped into my braces, and my physical therapists' hands on my waist - I had no concept of what "walking a little bit" meant. I understood walking, I understood standing, I understood that mom and dad were - needlessly - nervously standing by, because as I understood it: walking is something everyone does and this is not a big deal. So I walked: one foot in front of the other, the way I had seen my older brother and my parents, and my friends at school walk. I copied what was around me because that is how children first learn. As far as I had observed at that point, no one around me was concerned about walking "even a little." They just did it.

That first time I walked a few steps and then a few more, all the way to the end of the railing when I fumbled a bit to turn around. Did my upper body turn and cross over first? Was I supposed to reach one hand over to the other side of the railing? Or did my feet turn sideways first? Actually - back up. Wait a minute. Before all of those questions of "how do I turn around? And what do I do now?" came careening into my brain, I thought "Wow cool! I just walked!" My palms were sweaty, I probably looked a little robotic in my uncertain positioning, and even though I couldn't see my physical therapist behind me - I knew that she was beaming. After that first session was over she probably wrote in her physical therapist patient chart: patient walked with the assistance of bars and long leg braces. Distance covered: 5 ft. 

I'm pretty confident that she didn't check off on her charts:
X  Patient Walked A Little.        Patient Walked A Lot.
But I'm not a physical therapist so what do I know?

So as you're standing there in the aisle of the airplane or bus, or if you're standing in front of an amusement park ride, or maybe you're on the deck of a swimming pool, or you're standing at the foot of my hospital bed, or you're on the dock in front of a boat - and you ask "Can you walk even a little?" Please don't be offended when I look back at you baffled. I just don't understand your question. I mean, I get what you're asking - but I don't actually * get * it. Maybe it's because you are uncertain of how to transfer me, which is fair and I would be happy to help guide you. Maybe it's because you don't want to assume that I can't walk at all because for many people translates into I can't do anything at all. Or maybe you are uncertain of how much help you should offer, and don't want to come off as intruding on my stubborn independence. Thank you, I appreciate it.

(Don't even get me started on how it must feel for those of my friends who can't walk even a little! This is one of those rare moments in the world when something "even just a little" is not taken as an easy feat, it's not taken as anything even close to 'cute,' it's probably not even taken as anything little at all! For someone who can't walk, your 'little' question may be an unwarranted reminder of a BIG 'failing.' Your question may have just driven a big awkward spear into where you meant to inflate a raft). 

But for someone who has never put her steps forward (or backwards) in life in terms of little - I hope you understand why your question comes off as slightly jarring and a little awkward. Does it make a difference to you whether or not I can walk a little after having rod surgery? Or a lot after breaking my femur? Are you going to record the "little-ness" or "big-ness" of my walking ability in a patient chart I don't know exists? Why should we put a 'size' on our steps at all? Why can't we just accept it without the vague restrictions and fuzzy borders?

Those are my questions to you and when you've answered me all of those, then you can answer for me this question: "Can YOU walk even a little?" And let me know how it feels.

If you think your friends/families/other networks might appreciate this, feel free to share this with them! ALL of the content and posts on this blog are always open for sharing -- the more the merrier :-)

It was just another too-early Monday morning. At least, that's what I would tell myself right after it happened. But in the pit of my stomach I knew there was really no excuses for what happened to me one morning in a school elevator.

The elevator doors slid open and I sleepily rolled in and pressed the number "2." I parked in the rear right corner, just as I usually did on so many other mornings. For the duration of that 12 second elevator ride I rested my head against the wall, yawning away while trying to ease my brain into productive-work mode. There were already two other people inside the elevator by the time I was inside. I assumed that they were students from the notebooks and backpacks that they were carrying. In my non-awake state I barely paid any attention to them, that is until one of the students next to me reached out and patted me on the head.
Immediately I picked my head up off the wall and looked up at him. In my head I raced through the names and faces of the students I had been working with, was he one of them? Why can't I just learn to love coffee like everyone else in the world? Why can't I be more awake right now to remember?! As I smiled blankly at him, hoping that he wasn't actually a student whose name I was supposed to have remembered - the other student in the elevator looked at me then at him. That student must have picked up on my blank smile.

"Dude do you know her?" The student asked the guy who had patted me on the head.
"Umm no, but I see her around all the time." He responded.
I was not only fully awake now but also trying to think of something to say that would stave off any potential awkwardness. Needless to say I didn't think of anything in time before the other student said,
"Don't touch people you don't know, man. Don't pat her on the head like that. You shouldn't have done that."
As if on cue, the elevator doors slid open right at that moment and I zipped out.

This certainly wasn't the first time where I was patted on the head, like some shivering puppy in the rain. And this wasn't the first time where I didn't say something when I should have in a situation. Of course I am thankful that the other student was there, that he said something for me, but really it should have been me. What I should have realized at that moment was that regardless of whether or not that was a student I knew, he should not have been patting me on the head. I was worried that it was a student that I knew, and in my concern for that -  I realized it's so much harder to tell someone you know to stop condescending behavior vs a total stranger.
Maybe it's because, for me, telling a total stranger "that's offensive, cut it out" is much easier to do than telling a friend, a relative, a teacher, or even a co-worker. But from that incident I learned that offensive behavior is just that - no matter the people involved. It's always rude, always needless, always hurtful. So that's what I have learned for next time, because next time there might not be someone else to say it for me, next time I know I shouldn't smile blankly back, next time I won't be making any excuses.

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.

By nature I'm not a very confrontational person so I'll try to be as civil as possible. I should warn you that what follows may make you quite a bit uncomfortable -- I am not sorry for that.

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.

Everyone knew she was brilliant, everyone knew she was a difficult professor, everyone knew she had all the 'right' and prestigious degrees after her name, and everyone was a little intimidated by her. While other professors on the small college campus were okay with students calling them by their first names, it was always Dr. E---- with her. No one ever asked if it would be okay to call her by her first name, like an unwritten law that's just the way it was. Not only was she the Chair of the Humanities department, head of the Honors Program, my Honors English Comp professor, and my academic adviser. But on top of all of that the first thing everyone saw was that she used a power wheelchair and also walked with crutches.

This is going to be fairly different from my other posts. I'm not sharing a story or giving advice. I'm just going to... confess? Vent? Below are somethings that sometimes float through my head regarding my disability/having O.I. but I always slam them down. Mute them. I power bomb these thoughts to smithereens before they ever get close to my lips. I routinely snatch them off the diving board of my tongue before they leap out into the world... and I hear it's not always good to keep things bottled inside so here we go: (can you tell this is difficult for me to do? Because it is. I am cringing, like someone is lifting a freshly broken bone)

1. I am jealous you're able-bodied. Actually I hate the 'normal' view of the world you get, the naturalness in which you can just flail your body around, and the way you can just collapse into a freshly sprinkled summer lawn after running your 3-5miles a day.

2. What the hell are you staring at? If I ruled the world I would have run your face over five times by now.

3. Could you be moving any slower? Seriously, not all of us function at this pathetic walking-pace. MOVE. I have places to be and things to do.

4. Go ahead, keep telling me that I'm "not missing much" because I can't get all the way up those stairs. You're only digging yourself deeper into a lie 'cuz I wasn't born yesterday.

5. I'm laughing at your disabled/wheelchair joke because you expect me to. Usually these jokes are dumb as hell to me and not funny at all. But I'm laughing because I'm already socially awkward enough and... everyone else is laughing? And when I make those jokes it's funny because they're true.

.... PHEW. Well, that was interesting to get off my shoulders. I lived and it wasn't actually as bad as I thought it would be!

A Small Note for the Big Adults: Knowing that my intended audience were elementary school aged children put a lot of pressure on me for this entry! After a lot of restless thinking I thought back to the authors I found comfort in around that age (Roald Dahl, Dr. Seuss, and Shel Silverstein) and decided a silly poem would be perfect. I hope this poem helps parents & kids discuss concerns they have with the first day of school, but in the end know that it's no way to live life to be constantly fretting. So please, if you could share this with the young O.I'er child in your life that would be wonderful, thank you!!
--

Tomorrow's Fracture Free Friday post is about my transition to middle school. This got me started on reminiscing on my time during that amazing three years from 6th to 8th grade. Although I may have fractured my femur four times, my arm a dozen more times and had many other injuries - I have nothing but fond memories of middle school. Below are just a few mini-stories I'd like to share:

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

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

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

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

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

Take-away Thoughts on Pushing Etiquette:

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