Showing posts with label disabled assumptions. Show all posts

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 are a miraculous thing. As a young girl and now a young woman - I'll admit that I haven't always positively acknowledged your worth, and ingenuity. This is a letter so that you can know how I have felt about you over the years, and it's also a letter for you to hold over my head on those mornings I say ugh I have to dress you again?! 

As a kid I felt bad for you. I put you through so much crap in those early years, seriously! Hey body, let's go race around the neighborhood on my bike today. Hey body, I wonder what happens if I tried to slide head first down the stairs. Hey body, let's show my guy friend just how hard I can punch him. Hey body, we're going to try rope climbing today. Hey body, let's dive into the massive 40ft wave pool! Most of those things were not the wisest decisions I have ever made and yet you went along with it. Most of those things wound up with you getting a cast put on somewhere, and all of those things were absolutely worth it. You're like my personal Magic 8 Ball: I rattle you around and moments later you reveal some truth that tells me how I should next proceed.
Then of course there's all the crap that all those other people put you through. And obediently you allowed it to happen, most of the time. Hey body, they're going to break you into 3 pieces and stick some metal in you. Hey body, he's going to bend you this way and that way to get a better x-ray. Hey body, she's going to make you break a sweat so you can learn to walk. Hey body, he's going to pick you up and swing you over his shoulders. And that's how I learned to trust, to know my limits, and to understand acceptance - because there are many things that happen that are completely out of our hands. So we can either be at peace with it or learn to work around that metal rod you rejected, after two years.

 You are my one and only, and it really wasn't until fairly recently that I have come to understand how to act accordingly. Sure growing up I was always told: "This is the only body you'll ever have, so eat healthy and take care of it!" But to a four, six, nine, or fifteen year-old time is limitless and opportunities are endless. We think that there's always going to be another occasion for a do-over, we can always take-it-back, or try-again... and while in many instances this is possible, since this is the one instrument and version of you that I have - I know I need to add to your uniqueness carefully. It's much tougher to erase a mark on you than it is to add, and no I don't just mean those things I add after the holidays!

There's petite, small, medium, large, obese, curvy, bell-shaped, pear-shaped, OI-shaped, type III shaped, type I shaped, average or above average... The labels that I can pluck out of thin air and give to you are infinite. There's pre-holiday and post-holiday, there's summer and winter - body, there's svelte and rugged, post-surgery and pre-surgery... there's media, ads, social expectations, "the ideal"... Quite frankly, body, I don't understand how you haven't cracked under this pressure! There have been many times when those labels hurt more than getting hit by a ball, and yet you haven't broken down from all of those categories. You've maintained being you. You've stayed true to your scoliosis, short-statured, long-armed, bowed legs, barrel-rib-cage, and easily bruised self. And even if I were to sit next to some other young woman with the same type of O.I., the same age, the same surgeries, the same hearing-loss -- you are still different, you are still you. This closeness and intimacy that you have revealed to me, and that has evolved over the years, is a little mind-boggling if I really let myself think about this.
I didn't always think about your differences in a total awesome-sauce spotlight. I used to be angry, jealous, and resentful of your differences. Sure, I'd think, it's easy to tell girls to love their body, to ramble on about girl-power - but does their body look like this? And is their body limited like this? There were never posters of a girl (delightfully clad in pink and pastels), jumping in a field of flowers and bunnies whose body looked like mine. I didn't exactly have anyone in my life I could talk to, and I'm certain that even if that space and individual were around - I didn't even have the words to express my confusion. Mom would just tell me things she "is supposed to say." My doctor would just talk about eating healthy. Teachers? Yeah right - like I was going to raise my hand in a class full of able-bodied peers to ask that. So I bundled you up the best I could, hidden under wraps of cool composure and a care-free attitude. It became a feeling that bounced around my chest, and then as I got older it vaulted into the upper spheres of my head where I continue to try (un)successfully to understand.

So here I am, writing this rambly letter to you. Is it a letter of apology? Not really. Is it a letter of thanks? Kind of. Is it a letter of explanation? Most likely. I wanted to explain where we are with each other. I wanted to explain that I don't always hate you, and I don't always love you either. I wanted to explain why I continue to be confused. Now I'll do as I've always done, as we've always communicated with each other - I'll wait for you to respond somehow in someway, and give me a small clue about how we can move forward together.

Patiently & respectfully yours,
Sandy

Often I am asked how I explain my disability or what is it like to have a disability. It's times like those that I wish I could just utter the definition of what disability means and be done with it. But I know rambling off some definition I got from some other source would be an insult to myself and others; besides, I also know it would be too limited in scope, too simple. That's what I'll attempt to do here, define 'disability' on my own terms.

Since I live with a disability I've never looked up what it means in a dictionary. I already know what it means because I live with it, it's a part of my life. However, before I go reinventing the wheel it's important to know what already exists out there. So when I turned to Dictionary.com for a definition of disability (for the first time in my life) I found myself taking a few deep breaths as I read what it said. My immediate thought after reading the definition was what a superficial definition!! The word has a thousand more forms than just being a noun, plural and singular. And it is certainly much more than just the 'inability to do..', 'the condition of being unable to..' or 'an incapacity...' But it wasn't until I got to the part where it said Antonyms: 1. ability, capacity that I began to get angry, furious even at the blatant inaccuracies in word choice. Reading the antonyms made me angry because it seemed to insult my entire existence, my entire life, and the person that I am growing to be.
The way we define our words is a direct reflection of our society. Disability, like the terms race and and culture, is a socially constructed concept. How does society view disability? How is it treated? What is being done about it? The answers to these questions and others shapes how disability is defined. For the most part the society that I live in treats disability as a social obscurity and medical anomaly; it is seen as something that society seeks to provide aide for, or to benefit. Examples of this: This is an event to benefit kids with disabilities.. The school has Special Ed. classes for students with a learning disability.. or That's an organization that provides various services for those with a disability.. Needless to say, by and large, someone with a disability is usually equated with being the recipient of services - medical, social, government, or otherwise. After I thought about it, I realized no wonder why antonyms for the word 'disability' are: ability and capacity. 


But just because it's written that way doesn't make it right.

So I propose a mental shift. And not just in the way that we think of people with a disability. In order for a social mind shift to happen the change in perspective needs to affect everyone, but especially those in the majority of the population. In my two decades of living with a disability, I can boil its meaning down to one word: challenge. A disability means that I have something that challenges myself, and it challenges everyone that I come across in some way small or large. Instead of seeing myself as the recipient of help, services, aide, charity, etc. I see myself as offering an opportunity to challenge others and to continually be challenged myself. With that said, here is my personal working definition of disability -- something that I am sure will change as I learn more about myself..

dis·a·bil·i·ty 

1. a challenge a person may have been born with, or may have come by through an injury or accident, or other trauma 2. a state of being that is outside the norm, exceptional 3. an opportunity that welcomes challenges to expectations and standards 

My friend from college was visiting earlier this week, I shared with you my slightly unhealthy obsession with Green Day, and wrote about the time I escaped from school grounds! If you missed any of the posts just check'em out below:

• Monday: No kid ever intentionally wants to cause concern, injury, or worry. One time I left my high school without anyone's knowledge or permission and all I could say to the school nurse was "I Didn't Mean To." 

• Tuesday: The First Fracture I Ever Remembered involved some neighborhood kids. I don't remember what bone I broke or how long I was in the cast for, but I did take away some life long lessons from the incident!

• Wednesday: Music has helped me get through some tough times. I asked my readers and twitter followers what songs are on their FracturePlaylist and compiled a list. Also through in a few of my own!

• Thursday: My friend from college was visiting earlier this week and on the way home from dinner one night she pointed out how I expect others to treat me. I'm just used to THAT voice. 

• Fracture Free Friday: This is a question I get asked often "Can you grow out of your brittle bones?" And don't forget, if you ever have a question you'd like me to answer just send me an email oi.perfect@yahoo.com 

WHS was the kind of school where no kid would ever get lost in the shuffle. The school was tiny and the population of students inside even tinier. It was safe, cozy, New England style 'quaint,' the janitors recognized every face, and the librarian knew which forgetful teenager had yet to return which book. In a large binder in the Attendance Office, anyone could easily look up any student's schedule and find out where s/he was supposed to be. Only juniors and seniors were allowed off campus during their 90min 'free blocks' and even then you had to have signed parental permission. It wasn't just a school where everyone knew who everyone was, you could technically also know where everyone was.

One of my loyal twitter followers noted that these questions ALWAYS start off like that. I know what your mother and your teacher told you but there are such things as 'stupid' questions. Being in a wheelchair and 'looking different' I have gotten all kinds of practical, and the more absurdly ridonkulous questions thrown my way. I will share a collection of the 'Special' Questions that made it into the Truly Stupid Questions Hall of Fame. And yes, I actually did give these responses.

Q: Have you ever broken a bone from farting?
A: No but we can try it out right now if you want

Q: Can I play with your wheelchair's joystick?
A: (Usually I scream this at the top of my lungs) STOP MAN HANDLING MY JOYSTICK! 
Many of my friends have asked me this because they think it's fun or 'cool' to drive my wheelchair; I guess if you're my friend there are certain perks to rollin' with me ;-) But I'd like to say something else about this question -- It's slightly stupid to me because in my mind it's like asking someone who is able-bodied "Can I play with your legs?" You try asking someone that and let me know how that goes for you. 


Q: How do you know when you've broken a bone?
A: ....Cuz it'll hurt...like... a sh*t ton!
I think it's similar to asking someone how do you know when you have a migraine or a headache?

Q: You went to college?
A: I didn't just GO, I even graduated!


Q: How fast does your wheelchair go?
A: It goes as fast as I need it to go.
Q: So like 30 mph?
A: No, I don't need it to go 30 mph. It goes as fast as I need it to go, most importantly it goes faster than you.
I don't really understand the fascination with people wanting to know how fast things go. Okay, it is pretty cool and all but... so? In the end people who walk are usually still panting out of breath behind me, or just annoyed that I am not waiting for them. 


Q: You can go to the bathroom by yourself?!
A: Yeah, I even know how to work those automatic hand-dryers and soap dispensers....All. By. Myself!


Q (over the telephone): Wait you're really over 18?
A: Yep. I know I sound young over the phone, I get it a lot.
Q: I can't believe this! You sound like you're about 9! Where's your mother? I don't believe you, prove it to me. Is this a joke?
A: ...it's about to be a joke because I am about to laugh at you for being such a cretin you ginormous tool shed.
Q: Oh. Okay. Yeah...uhh..I guess a little kid wouldn't know those words.

Q: How do you get dressed in the morning?
A: I have fairies that come out of my closet that put clothes on me the same way the little birds put Cinderella's dress on

Q: How do you sleep?
A: Hanging upside down from the rafters in a bubble, breathing in special calcium air that helps my bones get stronger.


Tell'em Like It Is: 

• I know that in most of my tips about communicating with others I am always urging people to be considerate, patient, and polite. But sometimes the situation calls for just giving other people a straight-up honest answer. Maybe a little too honest at times
• Try to have an amused tone when you give snarky answers; there's a difference between giving rude snarky answers and sarcastic/amusing snarky responses
• Be confident about yourself when you respond! People are asking YOU the question, so you should stick to your opinions and beliefs, don't worry about what others might think. If they wanted to they could have asked someone else the question instead, but they asked YOU
• Sometimes questions can seem downright rude. Whenever I get these kinds of questions I make sure that my response includes a tone that lets the other person know that 1. I am slightly offended 2. their question was not okay 3. they better get ready to get slammed back!

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!

Dear Readers,

At first it was because “mom needed to buy groceries in Chinatown, and there was no parking other than the commercial loading zone.” Then, it was because “dad had idled in the 2 Hour Parking zone five minutes too long.” However, by the time “your older brother took the car out with his friends,” I knew better.
The laminated handicap placard is a tangible embodiment of various aspects of my identity; as such, through the years its symbolism has evolved with me. Its presence has changed from malleable plastic to bold statement; its use has gone from reckless privilege to respected right; and its value increased from dispensable convenience to lawful accommodation.

Just like any other child, I was concerned with fitting in – not just at school but also in my family. Aside from physical differences, my aptitude for language, reading, and writing always made me the black sheep. My parents are immigrants who not only struggle with English, but majored in physics and math as university students in China. “English will not bring you money. Numbers, math, and medicine are universal – why can’t you be like your older brother who is going to be a doctor?” For almost a decade, there was one singular act that consistently answered that question: writing letters to waive ticket fines.

At first I did it because we all had to. I was in the 5th grade and we were each assigned a 'Reading Buddy', a Kindergartner who we would read picture books with and then do some sort of literacy-related activity. I was roughly the same size as my Reading Buddy but I remember reading together all the classic favorites like Corduroy, Chicka Chicka Boom Boom, countless Frog and Toad adventures, and Dr. Seuss' Yertle the Turtle and Other Stories. Back then my favorite thing about Reading Buddy Time wasn't the fact that I was helping some six year-old guess at "what might happen next?" It was the fact that I got to read, and then as the year went on I loved the fact that I was helping my Reading Buddy learn to read, and hopefully - love reading as much as I did.
I also enjoyed the fact that although I was a kid who might be the same size as a Kindergartner, and might have still needed to be pushed on the "baby" swings - it was possible to have someone else look up to me. More than that though I was also able to help this other person share in an activity that I loved so dearly. While it's quite some time ago and I can't remember how it exactly all made me feel, I imagine that I felt important, purposeful, and for once - I probably enjoyed the feeling of being able to offer someone else help as opposed to it always being the other way around. For a ten or eleven year old kid who was always the only one in her school in a wheelchair, that last feeling was huge.

And so it began: I grew to want and love helping others.  


As I grew older I volunteered at Special Olympics, sang at retirement homes, and tutored younger students. Though I never really consciously thought about it at the time, I am sure that a part of my drive for volunteering began with wanting to "prove something" to others. I'm not sure if it was ever just one thing I was trying to prove, but here are a few that come to mind:
1. I don't need as much help as some people might think I do
2. That I have something to offer to society
3. I don't expect to always be on the receiving end of assistance in society

In college I became more involved in volunteering on a different level. During this time I actually avoided one-on-one volunteering opportunities (i.e. feeding the homeless, doing a shift at a food pantry, or helping underprivileged girls find the right prom dress). At the time I wasn't sure if I really believed that those efforts "worked" or made any "real" dent in the larger-scale issues like poverty or homelessness. But more importantly I avoided those opportunities because I wasn't sure who I was yet. I still felt that I had something to PROVE about being disabled while being able to help other people, I just wasn't sure what it was! I didn't believe that I could offer anything to people in those situations (because they were so different from my own), and instead focused my student-run club (Students for Social Justice) on spreading awareness on bigger picture topics. We invited guest speakers to campus, had discussions after we watched documentaries, or went to protests. I still loved helping others, and at each club meeting or event I was fired up and motivated by my passion to educate others on the issues.
The months and weeks leading up to graduation I had a lot of big decisions to make. I was swamped with finals, law school scholarship applications, trying to decide whether or not I wanted to go straight into law school, or if I should continue figuring out what it was I wanted to help others with. Because law school is such an expensive and mentally intensive commitment I figured that if I was uncertain about it then I probably shouldn't force myself to go. So instead of going straight into grad school I opted to do a year of service with AmeriCorps. I wanted to figure out how I could best serve, in what areas of society, and with what populations; law school I knew would always be there waiting for me.

After too many AmeriCorps applications and researching programs I decided to go with an AmeriCorps Mass Mentoring program - this is a corp of (mostly) young people who serve in mentoring programs throughout the state of Massachusetts. Why did I choose the area of mentoring? I have been incredibly lucky to have many mentors in my life. Because I was the only one in my family who was disabled and had many different interests from the rest of my family members, I always sought out mentors to help me in things that I was interested in or struggled with. I recognized that I would not have gotten to where I am today without my mentors and also realized that many students fall between the cracks and miss out on meeting that important connection to another adult in their life. So for an entire year I spent developing a mentoring program for 18-24 year olds at a local community college in Boston!
The work was exhausting and I was frequently frustrated but what kept me going was that similarly to my love for reading, I truly believed in the importance and effectiveness of mentoring. I knew that if I could only have ONE student go through the mentoring program having had a positive experience, and understanding the importance of having a mentor in his or her life then I would be successful.

That was last year, and now a year later I have a better sense of the population I know I can best serve and why it is important for me to work in that area. But what I think is most important to me is that I have come to understand that I will always continue offering assistance to others, but it won't be because I have "something to prove" - now it's because there will always be something in my life that I love (whether it's a way of life, an activity, some issue I am passionate about, or a hobby) and want to share this with someone else.

This is the group of AmeriCorps Ambassadors of Mentoring I worked with!

My parents used to always remind me how appreciative I should be about living in the US. People with disabilities in other countries aren't always afforded the same liberties and independence that many of us might take for granted. Activities that I don't think twice about: going to school, hanging out with friends, going out to the city, and medical care may not always be as easily attainable for disabled individuals in other countries; of course it depends on the country and, I think, in part on the culture as well. As an American tourist in Hong Kong and Macau for two weeks this different perspective had its ups and downs for me. 


I am too curious of a person to not want to experience things first hand. It doesn't matter what it is, if there is an opportunity my first response is "why not?" So with that attitude in mind I wanted to go everywhere and see as much as possible. My enthusiasm though was met with a ton of staring and gawking, the kind of eye contact that lasts a little too long for comfort between two strangers. Between two adults, or groups of them from young adult to the elderly. Never have I experienced this kind of ...thing... before. Their strange stunned stare was a mix of their curiosity, their sense of awe, wonderment, and a dash of confusion. In that part of Asia there were a lot of tour-guide led groups, many of them were from India, China, Korea, or Japan. The countless pairs of eyes that darted to me and away from whatever monument or statue they were supposed to look at was shocking to me: at times I felt like their staring meant I didn't belong there. As if they were silently telling me I didn't fit in with their culture, the environment, or their expectations. Suffice to say, I was confused by their confusion. 
Surely these people had seen a wheelchair before? I am always hearing about how in some countries in Asia the population of elderly is growing at a rapid pace - I knew that disabilities and assisted devices like wheelchairs, walkers, canes, and crutches existed in their worlds and communities. So what was wrong? What was with the slightly crude staring? 
And it wasn't just a slight glimpse or quickly meeting their eye-contact and then the other person would turn away. It was a stare, one that I would hold as I rolled along a few feet at a time. For the first few days this happened I would flinch a bit and then quickly look down at the floor or away, but still I would feel the intensity of their eyes on me. I was very uncomfortable and was exhausted by just the constant barrage of silent questioning I could sense. However by the end of the first week I decided to heck with them, I had flown to the other side of the world and could not afford to let awkward cultural differences get in the way of vacation time with my family. 
Maybe it's a cultural difference? Are people in the States more subtle about noticing differences than in other countries? (This was really the first vacation where I was consciously making an effort to be observant about this behavior..) Are Asians more blunt about things? My parents were both immigrants from the Eastern hemisphere, (one from Vietnam and the other from Hong Kong) and so I was raised within an Asian culture. I have to say that I think we are a little bit more blunt than Americans when it comes to personal differences. I have known Asian parents (including my own) to berate their kids for being too stupid, too fat, too slow, or anything that wasn't an accepted societal norm. (For those of you who have not heard of the Tiger Mom article, please refer to this). So is it because I am not seen as visibly 'perfect' and don't look 'normal' with my bowed arms, barrel rib cage, and large head that was the fodder for the staring? I don't know and because I was a guest in the country, and many of those who were staring were elders - I never confronted anyone. 


I know I wrote quite a bit about how uncomfortable the staring was for me, but this was really the only major hiccup. Whenever my manual wheelchair needed to be lifted into a store because it had one or two steps the employees were always very helpful and made no commotion about it. Or if we were eating at a particularly crowded restaurant staff made sure that my wheelchair had enough space to pull up to the table, and surprisingly (and unlike in the states) no one talked to me like I was a young child! 


If I could rate my experience traveling in Hong Kong & Macau I would rate it a 7.5/8 with 10 being the best experience and 1 being the worst. I had a lot of fun, I really appreciated the patience my family had when it came to managing accessibility logistics, and am glad that I got to travel at all! Once I get a minute to breathe I will upload more pics.. thanks for being patient!

Tips on International Traveling:

• It's important to stay open minded. It's not just about the culture that you are visiting and absorbing, but be open to the impact you might have on that culture
• Bring your most reliable and easily manageable wheelchair. (A manual wheelchair if possible!) Although having a manual wheelchair meant giving up some of my independence when it came to pushing myself around, I was able to see and experience more in it than if I had my heavier power wheelchair
• Don't expect things to be done like you are used to, and never assume that they should be
• Although you are in a foreign country, being in a wheelchair has some universal experiences: needing to sit down and therefore being at a lower level, and the need for elevators/lifts/ramps. I have found that people everywhere are aware of this and will try to meet these most basic accommodations 
• Someone who needs help knows no barriers. A person needing help is a person needing help regardless of what language they speak, culture, or country you are in. Don't be afraid to ask for help
• When booking ANY flight (whether domestic or international) don't worry too much about choosing seats. When you get to the gate and check-in, notify the person at the desk that you are in a wheelchair and they will always try to move your seat for you - usually closer to the front or to the restroom
• Expect to board a plane earlier than other passengers, especially if you need the assistance of an aisle chair
• Always stick with family and friends! 

We get it. OI'ers are small, our heads are usually larger than our bodies, we have frail little limbs and torsos, and we have higher pitched voices - the rest of you think we're cute as heck. But please, unless we look up at you with the need to be burped or need a change of diapers: Please Do Not Gush Your Voice At Us. 

I'm sure you know what I'm talking about right? That voice people have where every decibel out of their mouths is drenched in honey. My Gusher Radar goes off when a stranger gives me that smile where the corners of their mouths are practically tied with a dainty bow at the ends. And then they put their hands palms down on their lap and bend their knees a bit, then bend their back down a bit. It's always a bit - never a full fledged crouch or anything. Or if they are not crooking their entire bodies, it's their eyes. Some people will, literally, look down at me. Their eyes will level me in one glance, under cutting my years in one naive blink and remind me of the fact that they are adult-like and I am a kid who is still toddler height. When a person goes into that Gusher Position there are bells, whistles, even a mental siren that goes off in my head. Already my ears begin to shut down and my brain usually turns off for the next 2 minutes of sugar coated conversation. I'm listening though, don't worry, The Honey-Dipped Voice is just muffled in my head for my own sanity. But whatever the other party is yapping away about - I am never rude when this happens. I listen, my face just blankly allowing the honey to smother it.
It's not that it's just simply annoying or disgusting to hear after awhile. For me, anyway, it means that the other person has not only ASSUMED something about me - but then they went ahead and blatantly acted on the assumption. It's just rude. And then the rudeness quickly snowballs into awkwardness, and spirals into some out of control slipshod mess - usually leaving me with a look of disgust and the other person continues to be naive or visibly uncomfortable. By the end of the conversation I have either made it clear that I'm not under the age of 5, or that I clearly just stayed silent and smiled sweetly to get that free lollipop.

I know it's a baffling concept but I s'pose what my mother said is true: Too much sugar is never a good thing.

On Stopping the Gushing:

• The best way to handle any source of potential awkwardness or conflict is to be civil and polite. 
• Just because THEY talk to you in that way doesn't mean YOU need to respond in the expected age. Respond how you would normally respond to your friends or family. This usually gets the point across very quickly and in my experience the person changes their approach immediately.
• When you meet someone new and they give you the smile that is the onset of a gushing voice, I usually just give them a quick smile and then look away to avoid the conversation.
• Sometimes I have said "it's okay, you don't need to crouch down like that.." This gets the point across immediately as well
• Though I'm not particularly great at this latest technique, I've been working on sending my own condescending smile back to them. Pity the person who thinks that I am 3 years old and incapable of much else besides coloring!
• Tell yourself in your head "this person just doesn't know me yet" and it will help calm frustrations, anger, and disappointment in your own response back 

1. When people say "sorry" after exiting the accessible bathroom stall
Look, we all need to do what we need to do. It's a public bathroom stall and unless you shoved me out of the way and went ahead and used it first while I was still in line - it's totally fine if you use that stall. It doesn't have my name on it! Someday though... when I get my own house, or when I become supreme ruler of the universe - whichever comes first.

2. A max view of the maximus gluteus
Being in a wheelchair means that I am at crotch or butt view. Sometimes I don't mind it. But those sometimes situations is purely restricted and determined by me only. These restrictions follow the guidelines of me voluntarily choosing which view and which maximus I want to view. Also, don't fart in my face. I mean that's just common sense.

3. Allowing me to cut 1 place in a line
Sometimes I'll be at the grocery store or waiting in line at the cafe and some well-intentioned stranger will say "oh here, you can go first." And as I do the awkward "no it's okay..." they'll insist on allowing me that THREE MINUTES of wait time and 5 inches of space ahead of them... as if it'll save me from the hours of sitting I have already been doing earlier in the day. Also this is even more ridiculous to me when it's a line of more than 5 people.

4. When both doors are opened at the same time
I'm not the Queen of England or even the head of my household. I'm not even the first born child. But it's a little hysterical to me every time I exit or enter a place and strangers will insist on opening both doors for me simultaneously. Should I be offended? Is my wheelchair that wide of a load? Am I fat? Do people know how ridiculous they look when half their body is hanging on to one side of a door, and then they fling their other arm across to try and open the other door. And I make the grand entrance ... right under their arm pit?! Thanks for reminding me that I am that short and apparently that helpless too.

5. Could you just walk over to the side of the counter please
There is this one ice cream parlor that I enjoy and in order to give them my order I have to shout over what seems like The Great Wall of China to get a waffle cone, no sprinkles, one scoop of Oreo cake batter. Sometimes I will angle my wheelchair to the side where it's a bit lower and I can see which hipster college-student employee is preparing my treat. And after that 0.009 seconds of playing "Where's the Customer?" they spot me and that light bulb flashes over them and they seem to get it... but still they dangle the cone over the Wall. And when I grab my treat sometimes I feel like I just won an award at a carnival game, but my prize is edible and not some fluffy stuffed animal.

Addressing Pet Peeves:

•  Each of the above are amusing to me and I've come to understand that they are just part of the package of my 'unique perspective' in life. But whenever it gets to be too much I have gotten better at addressing it, pointing out when pet peeves annoy you will only seem like whining and complaining if you make it that way - there are other ways to say it to be informative and you may even help someone else understand better!
• Just because it's a pet peeve for you doesn't mean that it's a pet peeve for everyone who has a disability, is in a wheelchair, or has O.I.
• I have begun to pick up on the fine line that separates a pet peeve from people who behave out of ignorance. I'm still learning how to navigate these situations but I've come to find that they should be handled differently and cautiously. 

When I was younger these questions were posed to me a lot: "what is it like to be in a wheelchair?" or "what's it like to be disabled?" Growing up with these questions in mind I would frequently get confused as to what a disability is. Is it a feeling? An identity? A mentality? A diagnosis? All of the above? And how do I incorporate all of those into my daily life? Should I be conscious of being disabled all the time? In other words should I always 'feel' and 'think' disabled?

Needless to say I was and still am one to over think things into a pulp. At the risk of already growing 'silver' hairs in my early 20's, I have done my best to not mull over those questions 24/7. Instead, living those questions and figuring out the answers in the process of life have been far more interesting for me. Still, once in awhile I find myself slipping back into the cycle of self-wonderment. Recently I started thinking about the times when I do not consider myself 'disabled' in an attempt to understand the times when I "am" disabled.
For instance I always begin my day "not disabled." I wake up in bed, look at the ceiling or out the window and stretch. In those sleep-wake seconds before I turn to look at my empty wheelchair parked next to me I do not consider myself 'disabled.' In fact, to be quite honest, I consider myself rather be asleep because I am not a morning person. Then when I reluctantly clamber out of bed and slide into my wheelchair I am still not disabled. I'm just grumpily trying to figure out what crevice my seatbelt has slipped to now and prepare to sloppily push myself towards the bathroom. As I get into the shower and then get dressed I'm not disabled, I'm just trying to throw clothes on my body and get myself out the door. I'm not a make-up person at all. In my blunt opinion whenever I think about putting make-up on myself I think that somewhere in the world a clown is doing the same thing... and to be honest, I live my life to entertain myself, not to entertain others.

Maybe around this point in the morning I first notice that I am 'disabled.' I look at myself in the mirror that is angled down towards me, the reflection of me sitting in my wheelchair looking back at my now 'a-little-more-awake' self. I notice how the bowing of my ribs almost forms a barrel, but then when I think of barrels I think of too much beer and once again for those .09 seconds I am not disabled. I am just a 20-something who likes to party with her friends. And then I know that despite having length to my femurs my lap is somewhat non-existent because they too are bowed  from too many fractures and misshaped collagen. I scrunch up my face in an attempt to make it less triangular but after awhile my face muscles will get tired and things will slip back into their broad forehead and cone pointed chin. My arms were never like airplane wings when I played that game as a kid, it was more like I had the arms of Frosty the Snowman - the crooked branches of an old tree. The lower half of my arms drop down past the bend of my elbow, it's like an upside down shrug. But even still, after grinning at my overly large head in the mirror and puffing up my cheeks to make a monkey-face I don't consider these features of me 'disabled.' They're just me. They are all characteristics that can be categorized as symptoms of the O.I. Like each of the different designs on the gingerbread cookies my friends and I make every year during the holidays, they're distinctive.

After all of this maybe then, I remind myself I am disabled? I head out the door and wait for the van that picks me up, or for someone to lift me into the car and put my wheelchair away. It's probably in the van where I am sitting for sometimes 5 min or more - that I think "just another part of the process." And I watch as the driver puts the useless velcro strap on me, then fiddles with the wheelchair tie-downs, then fiddles some more with the seatbelt (even though I already have a seatbelt). So by the time the entire process is done I feel like I am actually on the way to the insane asylum from all the straps, and not just ... on my way to work, or to cause a ruckus with friends. And sometimes on that van there are old people. And never will you see the miracle 75 year-old totally ripped grandmother on the van - I mean, OLD people. They have walkers and oxygen tanks and admire the speed at which I am able to zoom in and out of the van - and the precision with which I am able to park.
But then after all of that is done and I go about my day: as I wait for the elevator, or the accessible stall, the construction workers to move, look for the curb cut, look for the accessible entrance, hope the car sees me despite being short, raise my wheelchair seat to reach the bank teller - I am not thinking "this is me being disabled." I am only thinking "how do I accomplish what it is I need to get done?"

Of course this mentality is much "smoother" for me now that I am older and do not fracture as much. But even as a child when I did have more casts on more frequently, I didn't think of breaking bones as having a disability, or the times when I needed my wheelchair reclined as 'being disabled.' It was just "how do I continue to go on living?" And now as I'm older when people ask me "what is it like to be disabled?" I want to ask them back, "what is it like for you to live?" I may not know much but I think I'm beginning to find out that the answers are not too different from one another after all.

• I must admit that I feel odd offering suggestions on this topic as it is something I am forever working on myself. But, like so much else in life, I think the first lesson is taught from the family. Whether parents are successful or not in advocating for their children should not be the "main" steal for the show. Instead HOW mom or dad goes about advocating for their children should be an experience every child - disabled or not - witnesses firsthand. 
• Understand the fine lines between advocating, complaining, and arguing. This is something that I am only beginning to understand the differences between.
• Just because you are advocating for an issue doesn't mean that it is also your SOLE responsibility to provide a solution for the issue. Everyone should be involved. 
• Just as you should not feel like you're completely responsible for a solution, you should not need to feel alone in advocating either. Friends, family, other organizations/individuals can help as well. 
• It just takes practice. 

My friend I am about to write about reads this blog so I apologize M in advance for embarrassing you!! (At least it's for a good cause).
----
"Okay so when do you want me to pick you up again?"
"Umm actually I don't because I'm going to see a movie with T and she'll just come get me from the high school."
"Okay that sounds good. .. Wait Sandy, what do you want me to do with your wheelchair?"
"What do you mean?"
"It's still in the back of my trunk --"
"Umm.. I'm in it actually."

None of my friends (who I have met in person) are wheelchair users, never mind have OI. There have been too many times when I'll be out with some friends and they'll start to head for the flight of stairs or the escalator. It doesn't take them long to get flustered, embarrassed, or feel like a total doofus. Usually I just laugh at them or capitalize on my opportunity to remind them of how idiotic they can be. As odd and awkward as those moments can be, I am actually pleased in an odd and awkward kind of way that they happen at all. Let me share:
Is it wrong or shameful of me to be pleased when my friends forget that I'm in a wheelchair? Are they denying a part of me? Are they being selfish when they forget about accommodations? The answer to all of those questions is a resounding no (for me, at least). For me I have interpreted that as my friends seeing me as on the same playing field as they are. So many times in society I am faced with different (lower) standards, wrongly assumed, or my intelligence is thought less of - so when my friends mistakenly head for the escalator at the mall, I am... suffice to say, relieved. In my head I always happily sigh when this happens, with an "oh I can actually be thought of like the other majority." This is also true of friends who tell me about dreams they have about me and I am walking or I am not using my wheelchair. It's not weird.. it's weirdly flattering.

Isn't it a bit off when people overly applaud you for your efforts, that really, took no effort at all? I'm sure this has happened at school, in the work place, or even in your family. It is as if accomplishing something because of your disability is somehow deserving of more stars on the chart. Yes, I agree that people should be recognized for their efforts - but when folks start to give that half smile and that angled-down tilt of their head it starts to sneak towards condescension. Am I wrong? Am I right? There have been times when, I swear, I could have brought back a bag filled with trash that I picked up outside and gotten a standing ovation from co-workers. Let me be clear: I am not looking down at them and nor am I saying that they are any lesser than me. I am thankful for those opportunities and have been fortunate enough to have had amazing workplace experiences. What I'm saying is that as an early 20-something adult, I have not yet come to figure out how to address such awkwardness. But such situations have always forced me to think about assumptions people make about me, and if I am unfairly making similar, if not the same, assumptions about able-bodied people.

Suggestions on working around assumptions:

• Communication is a 2 way street and it is just as much your responsibility as it is the other party. Don't expect that people will know how to treat you because you are in a wheelchair; the individual might not be ignorant just inexperienced
• When someone has assumed your intelligence is less than it actually is, that's an opportunity to be gracious and the bigger person (irony!) Take a step back and realize that s/he probably has no idea what OI is about or, more importantly, what YOU are about. Show them! 
• Saying "I think..." statements when you suggest a more preferable accommodation can come off as less rude as "you should..." i.e. "I think it would be helpful if we could ask the waiter to put us at a lower booth.." as opposed to "the waiter is an idiot, he should move us"
• Somethings may be obvious to your lifestyle but it might not always be obvious to others. There have been too many times when I think "d'uh that is obviously not accessible, that's a 6inch step up." That should be obvious right? Saying something along the lines of "I will still have trouble..." or "could we find an easier way..." instead of "how do you call that accessible?!" 
• Just as it is important to let people know what you need help with and how, it is equally important to let others know if you DO NOT need their assistance - in a thankful manner ie "Oh it's okay thanks, I can pull out the chair myself.."
• I am sure many of us are tired of sounding like we are 9 or female (if you're a guy) over the phone. This can be one of the more infuriating aspects of living life with OI because the other person can't even SEE you! Usually when I get stuck with someone who assumes I am a child I quickly tell them "actually I'm 23...oh I know I sound like I'm 9.. I get that a lot." I've come to find that the last part of the sentence is important because it let's THEM know they are not the only ones but ALSO letting them know you're used to it and to move along in the conversation. 

I will admit that I myself am working on many of the above suggestions. Feel free to suggest some other tips in the comments section!