Showing posts with label OI image. Show all posts

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! 

One of the characteristics of having O.I. is bone deformity or 'bowing' of the bone. Arms and legs may look like boomerangs but instead of rebounding back to the thrower, some can cause pain to the owner and others have many microscopic cracks in the bone due to the bowing. I'm not sure of the exact science behind the cause of the bowing, but I know that the inadequate state of collagen (a protein in the body that creates the scaffolding for bones) is one of the primary culprits of the deformities.

But all of that stuff you could have looked up on Google or asked your doctor about. As someone with many bowed bones - some which have been surgically straightened with a pin or a rod, and others just left alone, I can tell you that they are (for me) a source of embarrassment and annoyance. Take for instance my right arm:

My right arm hangs at a downwards right angle at my side. The elbow juts outwards away from my body, and then the rest of my arm just dangles down - I have never remembered my elbow to be able to completely straighten itself. This was always a problem when I had to have blood tests - even though I am a lefty my blood is never drawn from my unused right hand. It is never able to lay flat on the arm rest for the blood drawer to stick the needle in. Instead my right arm awkwardly lays on its side, pinky finger against the flat surface tilted towards me. If you've ever played the game "7-up thumbs up, heads down" in school my right hand is perpetually ready to play that game all the time. So after struggling to get it to go straighter I'll look up at pathetically at the phlebotomist as they ask:
"Is that as straight as your arm will go?"
"...Yeah"
"Alright, I guess you were right - let's just use your left hand then."

But there are some things that my right hand is good for. It's angled perfectly to rest my head in the palm of my right hand when I am tired, and it is able to reach outwards just enough to grab open a door as my left hand steers my wheelchair through. When I raise my right hand in class or to get anyone's attention it accomplishes the task quickly because of its awkwardness, teachers are never sure if my dangling arced arm is stretching or if I am actually raising my hand.
Sometimes people will ask me if my right arm hurts me and it never does. Or maybe it does and I just don't know any different since it's been this way for as long as I can remember. When I was younger I hated my right arm and would use my other arm to try and pull it straight, or bang my left fist against my right elbow to try and unlock the joint. Of course it was always to no avail but I tried! My parents always looked horrified when I did this and always hollered at me to quit doing that.

Though I don't know many O.I.'ers and I've never talked to any of the O.I.'ers that I know about this, I am sure that (like anyone else) every O.I. has a part of their body that they wish would function or look better. I don't mean that we wish our bodies would look un-affected by O.I., I mean to say that in comparison to the rest of our bodies there is always something that does not 'work' as well as the rest of our quirky anatomy.

Bowed Bones:

•  When I was much younger I never understood why my bones were bowed. In my mind just because they were brittle that didn't mean they should be curved as well! Helping young kids understand where their deformities come from or how they happened (from an old fracture that didn't heal well, or from poor collagen, or other reasons) will help them better understand their bodies as they get older
• Adjusting clothes to better fit bowed bones may be necessary. For instance super tight jeans over a bowed tibia may not be the best idea
• This is something I am still working on, but learning how to accept the body and not be embarrassed about bone deformities will take a great deal of time - especially if some bowing may get worse (or better) over time and medical treatments
• I have found that working with physical therapists or occupational therapists to help fully utilize a bowed limb has always been beneficial and safe
• If legs become progressively bowed and the individual wears braces, it's helpful to modify the braces according to the bowing. I used to experience painful pressure points from where brace coverings would press to a bowed part in my tibia because the brace was not adjusted accordingly
• Even if the pain in a bowing site is not one akin to the pain of a fracture, if there ever is pain I suggest it be checked out by a doctor - this might mean the limb is becoming further bowed and options should be discussed

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 

"okay you're going to feel a pinch from the clamp and then the needle will go in" I gave a microscopic nod, my eyes wide and dead set on the 5inch needle she held. 
"it helps if you close your eyes and take a deep breath in, and then when I say breathe out you should slowly let it out. It'll be over before you know it!" She put the clamp on and I shut my eyes.
"Dude you finally did it!?" Back at the dorms my friends gathered around and asked me how much I bled, and whether or not it hurt. All of them were universally agreeing that it looked 'totally cool.' The it being... my eyebrow piercing. 


Yes my mother was horrified, my dad said nothing, and my brothers thought it was awesome. Why did I do it? Why did I wait until sophomore year of college, and 19 years-old? How come I got my eyebrow pierced before I even got my ears pierced? TO LOOK OLDER.

Taken shortly after "IT" happened.

It was my second year in college and I was tired of being spoken to like a child everywhere I went. Somehow being alone in the world, without my parents, the way other people treated me became more noticeable. I hadn't noticed it until then, but I s'pose having my family and parents around was like having a shield to fend off blatant stares, condescending voices, and crude questioning. Just like any other 19 year-old I wanted to reach my 20's faster, I wanted to prove to myself that I was capable of "being older," but most of all I wanted to prove to all the strangers I passed on the street that I AM FINE.. AND DON'T NEED YOUR HELP. Four years later I realize how much fun that stage in life was for me, but also how silly at the same time. Through internships, work experience, the dating scene, and the help of friends & family - I realized that it's not at all about how "child-like" in stature one might be, but it's about poise and how you hold yourself. There's a confidence that I have gained in my life experiences that have helped me to gain a person's respect and feel less like I'm actually the same height as their leg.
The moment I realized that empowering myself allowed my diminished physical size to seem much greater was a time that I will never forget. It's as important to me as when I first started walking. There's a sense of independence, confidence, and accomplishment that is unique to me and something I can claim as my very own. If I could give every disabled individual something I would give them their own moment of that realization.

Suggestions on 'Seeming Older': 

• It starts from the inside. If you believe that you should no longer be considered a child, it doesn't matter if your voice is high-pitched or you're the size of a 6 year-old. In this case actions speak louder than images. Act the way you'd like to be treated.
• Being smaller means that you probably wear smaller clothes. But this doesn't mean you are stuck with clothes with child-like images and silly slogans on your (professional) attire. There are many tailors around who are able to create appropriate jackets, blazers, pants, slacks, skirts, button ups etc. Another suggestion is to buy smaller sizes of adult clothing and or get them altered. 
• This tip took me years to learn on my own, but there is a way to look at someone without tilting your head upwards 45 degrees with your mouth gaping open. Look INTO the person as opposed to UP AT the person. When meeting someone new, meet their eye-contact as soon as possible. The 'playing-field' will already be half-leveled before you know it. (This takes lots of experience and practice,especially if you're like me and rather shy!)
• If you are fidgety, try not to be fidgety with your wheelchair or other assistive device. Constantly fiddling with your joystick, belt buckle, or gripping your wheels will tend to draw more attention to the image of being disabled. 
• DO NOT be afraid to ask for help. Knowing what you need and how to get what you need is a sign of mature insight. 
• If you find yourself in a situation where you are being treated in a condescending way, it's YOUR responsibility to change it... in a way that is respectful, considerate, and try not to burn bridges as you do so. Sometimes saying something like "well it's good to know I'm aging so well, but I'm actually..." or "Can we find a place for you to sit as well instead of kneeling uncomfortably?" Making light of the situation, or changing it to 'accommodate' the other person tends to do the trick!