Showing posts with label disabled child. Show all posts

From a young age I was often told "you should feel lucky that you were born in America." I didn't really understand why my parents who were from Hong Kong, and Vietnam made such a big deal about my birthplace until I got much older. Until I experienced some of the opportunities I have had, until the day I went to Macau on a family vacation and felt like a tourist attraction with the way many of the natives gawked. "They're not used to seeing someone with a disability out with their family on vacation..." It was explained to me that typically people with medical conditions are kept in their homes, held in research institutions, or simply become societal pariahs on the street. Indeed on my first trip to China, when I was around four or five, my parents visited a hospital and they were told they could leave me there so that researchers and scientists could do experiments on me. Needless to say my parents didn't opt to do that.

Instead of talking about the multicultural perspectives on disability, what I actually wanted to talk about today was how family shapes a person's perspective on disability. Sure, a child is sent to school and is surrounded by their peers - they may even have access to media and other resources that influence their own ideas of their disabled selves; however, I think that the biggest influence on a person's identity (if not the one that is most lasting) is a person's family. I was fortunate that my mom's presence was something of a trailblazer, a go-getter, and a conscientious student. My dad always the hard worker, vigilant in his respect, and one who valued kindness towards each other. Some of these things you could attribute to their cultural backgrounds as the only child, or the eldest son from humble beginnings in Hong Kong -- together they meshed these values to begin a family and raised my two brothers and me. My mom also used to tell me how fearful she was of people with disabilities when she saw them on the streets in Vietnam, she'd walk on the other side of the street or avoid crossing paths with them altogether. To this day I'm not sure if there was ever an explanation for that, or maybe because she simply feared and felt uncomfortable around what she didn't know.

Clearly my being born in the States helped to change that perception for my family. In America I was born in a state that valued early childhood education, that encouraged all kinds of therapies and services for kids with 'special needs', and slowly over the years (until well into late elementary school, and middle school) they would become more comfortable and less afraid of pushing me to the same standards and expectations as my non-disabled brothers. But being receptive to a community that was more inclusive & embracing of children with disabilities than they were familiar with, believing in their child's potential, and being comfortable with being wrong with what they once knew -- all had a tremendously positive impact on me. I think that I was able to grow-up with a strong sense of myself (expectations of myself, how I expect to be treated, goals I set for myself, etc.), and even though conceptualizing "what it means to be disabled" was not something I thought about until my early adulthood - my family's foundation certainly gave me the ability to think about this on my own.

Although I can only imagine it, I think being surrounded by those who undermine your individuality and potential can have a greatly negative impact on a person's eventual ability to be independent. Independence isn't just something that manifests itself in the physical sense (independent mobility, or living on your own, or getting dressed on your own, etc). There is also such a thing as independence of mind and I think that's the strongest and most valuable form of independence there is, the one where other forms of independence can then draw their strength and experience from.

I feel like I am starting to ramble into one too many directions here at this point, but the take-away of this entry is to emphasize the importance of a family's influence on an individual with a disability. That's often the first impression of how disability is seen by others, how it can impact the way you conduct yourself, and eventually (I think) plays a part in how far a person goes.

These are a few of the things I used to tell my parents or teachers so they'd get off my back. And for all the kids out there -- I really hope I'm not blowing your cover!!

5. "I'm fiiiiiine!" Every now and then we are afforded a 'free pass' to fractures. Maybe we got lucky and braced ourselves from a fall the right way, or maybe we accidentally bumped into something -- but miraculously no bones got broken! And as long as there was no sharp pain of a fracture I gave myself a clean bill of health. Arms crossed over my chest, face pouted, and I adamantly refused to allow anyone to "check to make sure.."

4. "It doesn't hurt that much." I never knew how to accurately gauge the amount of pain I was in. (I still don't!) When I was asked "on a scale of 1-10..." I never knew how the pain at 7 differed from the pain at 6 or 8. After awhile I did away with trying to figure 'just how badly it hurts' and realized that by saying "it doesn't hurt that much" I could knock off several birds with one stone! By saying this I knew that my parents wouldn't be so worried, and I also figured out that the crazy pain medication they'd give me would be a smaller dose. In other words I associated the pain with the medication, and the amount of medication was related to how long I could remain at school to goof around with my friends.

3. "I'm not tired." This is uttered out of the mouths of every child. After operations or major fractures it was expected that I would need to rest. And no matter how physically exhausted I felt I refused to sit around in bed for more than a few hours. For someone who does a lot of sitting in her wheelchair, I am quite frankly terrible at remaining in one position. I fidget a lot, I have a tendency to move around a lot, and being told to remain stationary sounds like you're punishing me. But of course after I came home from operations my parents would get me set-up in bed, and while I complained.. the second my head hit the pillow I would doze.

2. "I didn't scratch or pull the cotton out." In every cast I have ever had the cotton padding that lines the edge is always pulled out. Why? Because I itch. Because I scratch. Because I'm an impatient person who can't wait the 3 months until the thing gets taken off! Every time I go to the cast technicians they look at me knowingly, "I see you've been scratching again Sandy...there are red marks on your skin..." What can I say? If I had a dog I'd probably tell them that the dog did it.

1. "I won't get hurt, I just know it!" Somehow having O.I. also gave me the authority to be a licensed fortune teller. Whether it was jumping into the ball pit at someone's birthday party, or maybe it was trying to climb ropes in P.E., or the time I tried jumping on the trampoline, let's not forget when I sat on a roller coaster I was at least 6 inches too short for... I insisted on being allowed to do all these things because somehow I just knew nothing bad would happen. Spoiler alert: I never actually knew the outcome beforehand. I just wanted to try all of these things, but in my mind the more I confidently proclaimed getting hurt won't be a possibility - then maybe my chances of getting the green light would increase in my favor. Sometimes my persistence worked, often times it didn't... c'est la vie!

In previous entries I have talked about what is going through my head as my body registers that a fracture has just occurred. But what is going on around me? Let's shift the camera lens to my mother --

Generally speaking I am not a fan of labels at all (see my past entry about OI labels). But name-calling and verbal bullying is a form of labeling in its most loathsome state; this is a kind of labeling that isn't used to distinguish so much as it degrades, and it doesn't serve as an identifier so much as it discounts. Even if you don't have kids yourself, it's hard to ignore the anti-bullying efforts that have gone viral across social networks, mainstream media, and appear in headlines on a regular basis.
What's poignant about these anti-bullying efforts are the perspectives that they are coming from. Sheesh, can't believe I'm about to utter these words... but... Back when I was a child, anti-bullying efforts came from ridiculously cheesy cartoon characters, or adults who simply told us to "say no!" Or "don't say anything if you have nothing nice to say!" Now the efforts come from targets themselves - individuals who have taken the situation into their own hands and decide to rise above their abusers. We are only beginning to become a society that is able to look at its uglier aspects, even if it means we still flinch and want to look away instead.

The first times I heard the words "cripple," "crip," "gimp," or midget" were unmemorable. I don't recall the 'life-altering' moment when these words were first introduced to me, but it was probably around middle school that I knew these names existed (and isn't this the time when everyone else 'discovers' all the other insults??) No one else in my family has a disability, and I was generally the only student at school with a visible disability or used a wheelchair - with that said, I had no other adult or peer who would tell me the drawbacks and pitfalls of having a disability. I was very much my own lab rat. So when I first heard those words I didn't already know that they were negative connotations, it was the way the kid had said it in a jeering tone or a hushed voice so teachers wouldn't hear. But still, it took me a few years to fully realize that such language (especially coming from someone without a disability) was insulting and not to be tolerated. It also took me awhile to figure out what the words meant, and when I figured that out on my own - I simply decided that I didn't fit those terms so I wouldn't let it bother me.
When someone calls me a 'cripple' I see it as a descriptor of only a tiny slice of who I am. In my mind those labels don't apply to me because I simply don't associate myself with them. I'm too small to ride on most roller coasters but I'm too big to be captured in a one word insult. What can I say? I'm a dynamic person! When someone says that I'm a 'midget' my gut reaction is to say no shit I'm short - good observation skills Sherlock. How about you tell me something I don't already know? Usually it's not long after that the person realizes I'm a 'midget' who will readily give you a swift word lashing if you irritate me enough. Over time I have been able to accept my disability, whether or not I'm consciously aware that I'm even doing so. Being able to do that, in my own way and at my own pace - has helped me build a better sense of myself and identity so that when I am called names, my foundation is not as easily rocked. I've continued to work hard at understanding what makes me Sandy; it will take a lot more than a bunch of ignoramuses throwing around names to undo that.      

Having any kind of disability isn't always the most stereotypical beauteous thing to have. At least not readily, not when the disability is seen by itself, not without some self-produced effort and conscious decision to accept the disability. But acceptance takes work, it takes time, it takes failure, it takes strength.. and all of the other most difficult nuts and bolts of life that a person encounters in one lifetime. I believe that this is why so many resort to rejecting somebody's difference so quickly; simply stated - it's just easier to reject the difference than it is to accept. Just slap a label on it and shove it into some other crowd, or program, or institution and society doesn't have to look at it again for at least another 10-20 years.
But as we've seen throughout history, it's becoming increasingly difficult to just 'slap a label' on something and try to suppress the voices. I guess that the point of this ramble is that addressing bullying issues isn't just about understanding the need for equality, or inclusion. It's far more than the physical safety and mental sanity of our young people. And it should always be about more than the liability of the institutions that these incidents happen in. When we seek to address bullying in our schools (and elsewhere), I hope that there is some aspect of creating a space where every child is able to discover those tougher 'nuts and bolts of life' that I had mentioned above. Call me an idealist or what have you, but I believe that given the chance and opportunity - every young person has the ability to accept, no matter how difficult that process may be.

We can all make acceptance a way of life and not just an ideal we strive for, or a campaign platform we lobby politicians to provide legislation to. Every one of us has something to accept about ourselves; so let's stop wasting time doing something "because it's easier" when it's only robbing us of time we should be investing in something of far more value: bettering ourselves.

Maybe it was around the time I started jumping, skipping, and running in my walker that my physical therapist decided to switch to crutches. Mind you it wasn't the kind of crutches that dig a deeper pit beneath your arms but the kind you slip your wrists through, and then grip. I'd had my red walker since I was in Kindergarten till the fifth grade, and very rarely did the arm rests need adjusting (maybe once every 3-4 years?). My red walker was like my own mini-fort of safety, confidence, and independence. There were four prongs, the front two were wheels and the rear prongs had rubber stoppers. There was a front piece to it that served to connect everything together, and in my mind also served to stop me from falling over or from otherwise getting hurt. I used to turn around and sit on that front piece (even though it wasn't really a seat, and even though my P.T. said it wasn't safe). I could put my entire weight on that walker! I was able to lift it just enough off the ground to be able to turn corners, or even do a full 360 turn-around. Suffice to say I felt safe in that walker, it was with that piece of equipment that I learned to take my first independent steps in.
So when all of the safety, comfort, and security was stripped away from me I got nervous. Immediately the first thing I noticed while wobbling in my crutches was: there is nothing in front of me. My face could see the immediate floor in front of me. I then noticed how much of my weight I had distributed throughout my forearms with the walker. In crutches all of my weight seemed to be leaning on to two metal extensions, resting on rubber stoppers that were never completely flat on the ground - but instead always at an odd tilt, this made me nervous. What if it slipped? All I could see in my head was the replay of me face planting onto the pavement, crutches flying with arms and legs pointed in every which direction - kind of like a cartoon dog slipping about on ice skates.What if I forgot which I was supposed to move first - my leg or my arm? With the walker everything seemed so basic, so intuitive, it seemed like I had to relearn and reteach my body how to walk again. Had I really taken steps towards my independence? Or was I now just re-inventing the wheel?

"Okay, so which do you want to use today?" My middle school physical therapist had both my red walker and my new silver crutches in front of me. Without hesitation I pointed at my red walker.
"Well let's do some walking with your crutches first okay? And then we can play soccer in your walker, does that sound good?" 
"Fiiiine-uhhh" I grumbled.
Slowly and with a lot of patience from my physical therapist my body became used to the crutches. I found that I was able to stand with a lot more ease, move quicker, and suddenly my movement seemed to flow a lot more naturally. I was no longer pushing and jerking myself forward. Everything seemed so intuitive after a few weeks: I knew just how much to put my crutch forward without over-extending myself, I could match where my foot stepped to with where my crutch was, I understood the cross-rotating pattern of left-right-left-right-crutch-foot-crutch-foot. The weight on the palm of my hands where I gripped loosened over time, I was no longer as nervous, I was no longer scared of my new boundary-less independence.

It became clear to me that I became comfortable in my crutches when I used them on my own, at home. I knew that I preferred my crutches when I chose them over my walker when my physical therapist asked. And most of all my crutches soon became a natural part of my school day when I felt comfortable enough to walk with them around my friends at school. I was no longer limiting my use of the crutches when everyone else was in study hall and the pathways were safe for me to exercise in. I'd use them to go to lunch, I used them during P.E. class, and sometimes during the day when I was tired of sitting in my wheelchair.

The decision to switch from a walker to crutches reminded me of how resilient my body is despite its genetic fragility. It still shocks me how adaptable we are and how with practice even the most challenging and daunting experiences can become second nature to all of us.