Showing posts with label social interaction. 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?

It began something like this: My friend said "I invited a bunch of the other kids from class too! We're having pizza and we might also have a water gun fight, we really want you to come!" This was the age when talking on a cord-phone with a springy wire with your friends was the "in" thing to do. This was back in the day when "hanging-up the phone" required more than just pressing the "end" button.

We were old enough to be left alone to our own devices in the neighborhood, but still young enough to require parental play-date permission.

My permission was granted and my mother dropped me off at my friend's house later that afternoon. This was a friend's house I had already been to hundreds of times before. In other words, my parents felt comfortable leaving me on her living room floor and expected that I would be waiting in the same spot later on that night.
In a matter of seconds a group of my buddies circled around on the floor with me. Looking back at it now, I think their excitement was in part because another one of their trouble-making pals was involved, but also because I was not in my wheelchair. I was in a different state during playdates, one that may have appeared to look more accessible to my able-bodied friends. By this point in our friendship my friends knew that I crawled around, or used my walker that my dad had left on the front porch of her house.

"Some of the boys are upstairs playing video games. Do you want us to tell them to come down? Or do you want us to bring you up?" Growing-up with an older brother meant that I rarely got a turn on the nintendo, it didn't take me long to choose to latter option. My friend dashed around the house probably looking for her mom to bring me up the stairs. Instead,
"...this is my laundry hamper. It has freshly clean underwear in it, I checked. Can you climb in here and then we'll carry you up in it?" I probably nodded, probably also threw in something about how I always climbed into laundry hampers at home. And in I went, then up I went.

Hours after Sonic had raced around collecting coins, our stomachs gave a collective grumble. Back in the hamper I went, and down the stairs we trooped. I crawled into the kitchen, under the dining room table, and climbed up onto the chair - stuffing my face with cheese and pepperoni, swapping gossip and summer plans.
At some point someone got bored, and our 12 year-old selves began to scheme and then the conversation probably went something like this:
"Let's have a water gun fight!" 
"Do we have enough squirt guns for everyone?"
"I'll run home and get mine, and steal my brothers."
"Let's call up some more people and see if they can come over."
"We can all meet-up at the park, by the baseball field." 
"We'll start here, in the driveway. I'll go turn the hose on and fill-up some balloons."

The same friend who had rigged up the hamper idea, now turned to look at me:
"I think I have my old red wagon in the garage. I'll go look for it. But we can put you in that and then you can come with us to the park! We can even put the water balloons in with you." 
She threw a beach towel down on the bottom, I climbed into the red wagon and there was still enough space behind me to stack half a dozen water balloons. Someone had handed me a SuperSoaker and off we went, behind her house, through the wooded path, and towards the park - I bumped along and remember telling her that she was smart to have thought of the beach towel.

I don't remember much from my summer as a 12 year-old, but I remember that day. It was great. Everything about it was wonderful from the creepy daddy long legs that I killed in the wagon, to all those water balloons I got to hurl, to the boy who said "no, I don't shoot at girls", and especially the look on my mother's face when she came to pick me up.
My nike shorts, t-shirt, socks, and puma sneakers were drenched. But I sat on the same spot on the living room carpet, smiling up at her with my arms stuck out - sad to go home, and I knew in my head: this is one of those days that your parents won't ever find out about. This is one of those days that you can leave to their own worst nightmare. Today's the day when you figured things out and they don't need to know how it was done, they just need to know that I'm safe and happy. 

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.   

"You know, when we were heading out of the stadium people kept looking at me sweetly. It took me a few minutes to figure it out but I get it now. I wanted to punch them in the face." My friend and I were riding the bus back to campus, we had gone to see a Red Sox game at dear ol' Fenway Park. I looked up at him and could only shrug. He didn't have to say more to explain himself, and I didn't have to ask to know just what he meant.
Though my chair was lowered to the ground and he easily towered over me, I too had seen the glances. The look that said oh you're doing a kind thing by taking her out to have fun. It's besides the fact that the game day tickets had been mine. It's besides the fact that I was the one who showed him how to navigate public transportation to the game. It's besides the fact that I was not his helpless younger sister, or some child - but his equal, his friend, a partner in crime. It has everything to do with the fact that those glances decided I was not his equal.

"It's okay just ignore them." My younger brother mouthed to me in the water. I sat nervously on the deck of the swimming pool at the YMCA; it was 20-min of "Free Swim" and kids from all of the swimming classes were throwing themselves in. But first they wanted to satiate their staring appetites on the surgical scars on my legs, and the way the rest of my body bowed in places like the crests of ocean waves.
My younger brother, being shy, was waiting for me to get into the pool so we could play together. He was waiting for his older sister - the one he felt most comfortable around, to goof around with him, to have someone to beat in a race to the other end. It's besides the fact that none of the other kids paid him any attention. It's besides the fact that my younger brother is seven years younger. It has everything to do with the fact that everyone was missing the bit of courage that my kid-brother was displaying, the impatient encouragement he was giving me for my own good.

"Can we have a booth or a table please? It'd be better for my friend.." The rest of her words were drowned out by the DJ giving a shout-out, and the crowd responding with screams that were swallowed by quick flashes of night-club lighting. The hostess peered over her ledger and looked at me, shocked and confused. We stood there looking blankly at her when she fumbled to say something about how tables were closed to patrons when the main dining hours were over.
I began to fidget and gave an upwards swing of my chin towards the exit door. I was trying to say that maybe we should just leave and go somewhere else, but still my friends stood there. After a few minutes my friend finally leaned over the ledger and gestured with her arms towards the side of the night-club, in her mind it was clear that a table and a few chairs could fit perfectly. It's besides the fact that the staff looked shocked and confused when I entered. It's besides the fact that the hostess launched into some defensive explanation. It has everything to do with the fact that one night of letting loose, broadened the idea of expectations and acceptance in someone else's mind.

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.

Sometimes when we are fed messages over and over again we start to believe them. Our eardrums pick-up on the same sound bytes and begin mindlessly thumping to the beat of the outside noise. Words fall out of our lips that form around them, before our tongues can swallow the letters back. Eyes begin to glaze over to the signs that are most familiar to us, the ones that don't make us squint too much from the glare or the darkness. Put all of those actions together and the ensemble can be dangerous. Dangerous because it's easy to settle, to just give in to those most basic human senses and believe.

For quite sometime this is what I did. I became used to the messaging that shaped my life by my family, and the society that I live in. "You can't.." "You're disabled.." "You're handicapped.." "You're a dependent.." "You're on government aid.." "You're smart but.." "People will always help you.." "It's okay no one expects.." "No one is going to because you're.." "You're qualified for services.." "You're not qualified for services.." "Just work the system.."
These were just some of the things I heard, I spoke (more like I just mimicked), I saw the process and the experience. Of course not all of these things are negative! I would like to think that I've had a fairly positive experience of my role in my community, and in society at large - at least it's something that I can say I am proud of having today!

But I do think that when we have a disability others are quick to flock around us, like a feeding frenzy of pigeons at a park, to pick and squawk their two cents in. Everyone has a different idea of what we need, of what we'll be capable of, of where we should go in life, of the best course of action, of who will provide the best care - it's no wonder why some young people (or older?) may feel consumed by their disability! It's frustrating and can easily spiral into a disheartening feeling, that you have a thousand papers (of all the same information to fill out), and you need to call hundreds of (government automated voice) representatives just to say: yes I am disabled, yes this is what I need and I know damn well you can provide this. Is it just me or does that sound incredibly needy?

This is why I have begun, recently, to flip the equation. When I call I introduce myself as "Sandy..and I work at...and I need help with this..and could you tell me my options.." As opposed to "Hi I use a wheelchair and.." It might be a small change in the conversation, just a small flipping of the words - but I have noticed a readily positive change in reaction just from the way I present myself. The truth is just like us, other people have the same senses we do - they too are getting fed certain messages over and over again. We can't change how their senses process those messages, but we can change what they are being fed.
Sure, maybe after reading this post you will try this out for yourself (and if you do - let me know how it goes!) but I don't want to just sit here and tell you this is what has worked for me, and therefore you should do it. I am not your mother, your teacher, or pfff anyone in any kind of authority. This is not a game of Simon Says for you!  
I'm just another young person experimenting with the way I interact with the outside world, trying to reach for those scattered breadcrumbs around me - and deciding for myself who to toss them to. Consider this an invitation to join me.   

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?

Before I begin -- I bet 9 out of 10 readers already knew what this post was going to be about just from the title.

When you're born with O.I. you learn quickly that fractures will happen regardless of how careful you are, or what you're doing (or not doing!) And your family members who take care of you, raise you, and live day in and day out along side you learn the same thing. Sometimes when I am describing O.I. to someone who is unfamiliar with it, I always wait for that moment when they try to understand the fragility my life can have. Their eyes widen, their face tilts back in shock, and for a few seconds they are speechless aside from a softly uttered "...oh my.." And in my attempt to dim the light on the 'horror' of my 'situation' I, as nonchalantly as possible, say "shit just happens.." with a shrug. Because really, at the end of the day, that's all I can say about it.
But when you're on the other side of the fence I imagine that there is nothing nonchalant about it. When you're 5, 9, 11, 17, or even 25 -- when your actions have some part in breaking a bone of your friend, I imagine that the explanation is not as simple to you as "..it just happens.." I know that it's not a simple explanation because I have watched my friends fret over "what I did.." And I have watched their faces turn into one of deep embarrassment and guilt when I roll into school the next day with a cast on my arm. I have read lengthy apology letters written in Crayola washable markers, passed to me in the middle of 7th grade science class: Sandy I am soooooooo sorry. I'll understand if you never want to talk to me ever ever ever again.. And no matter how many times I have said "it's okay, these things just happen.." or "I don't hate you, don't worry it was just an accident.." I am never able to lift the feelings of guilt, shame, or burden off of their shoulders. It doesn't matter how long I've known the friend or that they know about the O.I., or even how well I try to mask the pain from the injury -- it's always that same winded blow to the stomach face that they look at me with when they realize what has just happened, all in a matter of seconds. 


Why don't I ever get angry with them? Why have I not ever called them berating names afterwards? How come I never hang the incident over the head as blackmail? 
I think that in part this is because of how my parent's raised me; or more specifically, it's how they treated fractures before I ever began school or knew that 'friends' existed. Sure, my parents have been frustrated by the frequency of fractures that have occurred or just by the fact that their daughter is hurt -- but never angry. Or if they have been angry, I never knew anything about it. They have always treated fractures as something that happens "because you have O.I..", never blaming me, my brothers, or other family members for an injury. In turn, as I have gotten older -- I have rarely been angry about a fracture. My parents set the model for my behavior; the protocol for what to do includes much more than just "call the doctor, and get out an old splint.." I watch how they listen when I tell them "I think I broke.." and I watch as they listen to the doctor explain the x-ray. And I am still watching as they helped me put my shoe back on a foot that was in a cast for 6 months. Yes I have felt frustrated, sad, in pain, and even felt helpless about a broken bone but never angry. It seems that a broken bone happens so swiftly that in those seconds there is no time for any sense of injustice to have left its mark. And after the bone has been set and I've been put into a cast, there is no time to vent at the gods and give fate an earful about how angry I am that the incident happened. I am already focused on recovering, on healing, on hanging out with my friends at school and having fun.
The simple response: Because we're friends.


So maybe all of this is something my friends will never understand. For me, experience has taught me that people will continue to feel remorse, guilt, or embarrassment when they accidentally did something that results in a break. I understand that such a reaction is to be expected and is natural. I suppose all I can do is hope for the day that others will also understand that my own reaction to a fracture is just as natural as well.

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.

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.