Showing posts with label self-confidence. Show all posts

The second post in this series comes from SD who shares her thoughts on how she finds her self confidence. SD is a 16 year old who plays the ukulele, will be the President of the student body at her high school next year, and her favorite lyric comes from Stornoway "on my way out for the very last time / on my doorstep straight into the sunshine / walking west and following the coastline looking for a sea change." 


I like to pretend my disability does not have an effect. I like to pretend that a handicap is like a hair color- an insignificant physical aspect, a small portion of who I am. And in a lot of ways, that’s true. In almost every way, my condition does not matter. It should not matter. I tell people it has no actual significance, that it should not determine anything in my life. This attitude has helped me become the social, successful student I am today. It’s shown people that I do not let the obvious get in my way. Because really, things like hair color and handicap do not matter in the big picture. What matters is who you are on the inside.
Unfortunately, I’ve found having a disability sours our sense of worth and stains our confidence. At least for me. Because in the back of my mind, there is this ugly little voice that says “You’re different.” It’s hard to forget when you’re unable to dance at school dances, run at the park with your friends, and ride easily in your boyfriend’s car. So I dance in my chair. I make my friends give me piggy back rides. I ask my boyfriend take my chair apart so it fits into his Prelude.  But even as you counteract all the obstacles OI throws in your face, it still is serving as a reminder of why you must overcome these issues in the first place.
I’ve done some thinking and have determined that it is time for OI teenagers to take control and create confidence for themselves! Here are five examples of what we can do to feel beautiful with our disability and confident in ourselves.

During my time at conference I met many people around my age (20 - 30 somethings) who all, at one point or another, held a similar outlook as myself on being an O.I.'er: "When I was younger my parents took care of all of this stuff for me. I wanted nothing to do with this; now I'm older and I'm learning to have more responsibility.." Usually this comment was followed by some half downwards turn of the lip, a shrug of the shoulders, and an uncertain sigh.

It could be said that I am infamous for not wanting to own up to being an O.I.'er for most of my life. We could get into the psychology of how my parents raised me (and my two unaffected brothers), or we could talk about how Asian cultures generally view disability negatively, or I could talk about how being surrounded by non-O.I.'ers allowed me to easily shove this other side of me in a dusty corner under the bed. It then only reared its awkwardly painful head from the dust mites as necessary.

But what I actually wanted to talk about is how attending conference allowed me to understand what having O.I. means... in a way that I had been too afraid to recognize. At least 50% of having O.I. is associated with the genetic bone disorder, and being a person who is prone to fractures. This is the 'identity' that I accepted for the longest time ever, but it wasn't until I attended conference that I have only begun to get beneath the science and medical jargon. I think what I'm trying to say is that my identity doesn't need to be wrapped up in the experiences I have had - not completely anyway. Yes, I am someone who is fragile but that doesn't make my identity fragile! It seems almost silly and obvious for me to say this but when your experience of having O.I. is limited to hospital beds and x-ray machines - O.I. was/is just a symptom of who I am as a person. Many of the posts I have written in this blog are my ramblings that result in my juxtaposing being a wheelchair user, or a disabled young person next to various childhood or day-to-day experience I have had.

Have you noticed?

I am not sure that I have really ever gone into what being an O.I.'er means for me. Maybe, though, if you took snippets and sentences from an array of blog posts we might see an outline of what I think it means... but I have done a (splendiferous?) job of avoiding the topic dead on. It's a side of me that is incredibly vulnerable. I sit here typing this incredibly nervous just saying these words! I don't like not knowing aside of me, it makes me feel uncertain and there is a lack of confidence in my gut that is slowly erupting - but the difference this time is that instead of turning away from that discomfort I'll let it sit inside of me.. and I'll deal with it in small doses. Knowing that you are here reading this from afar or maybe from the next town over gives me comfort, so thanks for coming along on this adventure with me. Sorry, I don't have any liability papers for you to sign... hope you've got good insurance!

All kidding aside -- The truth is I don't know what having O.I. as a part of my identity means, at least not yet. (Hopefully I'll get there soon - and when I do like d'uh you're gonna hear about it..) At the conference I saw that people were at different stages with managing their O.I. There were parents who were helping their young children navigate elementary school, there were older women who were concerned about the effect menopause will have, couples who had questions about having a child, teenagers who struggled with bullying or dating, young 20 somethings who dreamed about their ideal jobs.. it's interesting, right? When we see O.I. as not just a symptom or a diagnosis, but something that is a part of our identity - it becomes something that we are less easily able to separate, to leave behind the hospital curtain. Each day of writing this blog O.I. seems to sidle up next to me and I have been trying my best to scoot away a bit. Sometimes I'm more successful at creating that distance than other days. Most days I probably am creating a rift between myself and that budding identity that may be causing more harm than good. It's apparent to me now that like magnets we are inseparable.

As I had mentioned in this post while reflecting about conference, O.I. is generally the last thing on my mind in my everyday life. Unless I have a fracture. I'm not saying that all of a sudden I'm going to be wearing a t-shirt that has O.I. on the front and a picture of a collagen mutation on the back.. I'm also not saying that this'll be the first thing that I bring up when meeting new people. It probably won't be on my mind on an everyday basis. What I am saying is that I have accepted that it is a side of me that has taken up more of me than I have allowed it to do. And in that sense is how I have probably been hurting myself. What right do I have to deny myself from... myself? That's just sad! But I am relieved and ecstatic to find out I have the full control of changing this course of action. One step at a time, slowly.  

So, what do I do now?

Recognizing that I am uncomfortable with this is probably a good first step. Trying to get my thoughts on it outside of my overly active-analytical brain is another good step. Beyond that? I hope to continue on the path that I'm on -- exploring new opportunities, being comfortable with my own uncertainties, and somehow in the explosion of those two things together.. learn more about my identity.   

If you are like me and you over-analyze everything until it is a mushy pulp, then maybe you are also confused about what it means to be a woman with a disability.

Before I begin: there are many other bloggers out there who focus solely on this topic, hundreds of articles, and academic research that is being done in this area. I am just going to attempt to fumble my way through what I think it means, or doesn't mean, or something..

*BIG SIGH* Here we go:

• I think it means that I am particularly hungry for all things self-empowering. If you asked me to define the word self-empowerment I might give you some vague definition that has to do with... achieving goals, self-motivation, confidence, and knowledge to tackle the challenge at hand. Throw that all into a pot, wave your magic wand and voila! 
• I believe it means I sometimes get condescending behavior and 'social norms' for how women are treated in society mixed-up, A LOT!
• It means that I have yet to find high heels that don't look totally goofy and dumb when I wear them sitting down.
• Being a young woman with a disability means I am, personally, staunchly averse to all behaviors related to "playing the victim" ... even when I may in fact be the victim in a situation, sometimes I would prefer to pretend that I actually am not.
• It means that via nature's natural roles I find myself easily able to listen and empathize with others.
• It means that it is important to me to be unafraid to take on leadership roles.
• It means that it is even more important for me to be able to speak-up!
• Sometimes I might misconstrue criticism as a personal fault, or as a fault of the disability - and be at a loss for what to do or how to respond. Many times I might be overly sensitive but you, of course, would never know.
• I often think about the way I adapt to situations and always leap at the accommodations that are the most elegant, diplomatic, non-confrontational, non-disruptive. 
• I sometimes wish to blend in.
• It is important to me that I know my choices, options, and how to access all of them. Also that they are easy to access and not a logistical pain. 
• It is important to me that others in my situation are given the same opportunities, same access, same boosts of encouragement. If they are not I automatically feel bad, that I did not do enough to help others achieve; part of my achievement means that others are also able to achieve.
• I get frantically nervous about whether common practices of chivalry are done out of social politeness or out of assumptions that I cannot fend for myself.
• I am naturally self-reflective and uncomfortable with some of the things that I discover about myself. Those thoughts hang out in my head for a while until something else 'more important' knocks it away. 
• It is important that someday I am comfortable with being vulnerable, because I have recently discovered that is a powerful experience. However it is something that I would rather first flee from than face. 

I am slightly embarrassed that I neglected to list that April is also National Poetry Month in yesterday's post.

Among my friends, and now you - it's widely understood that my preferred means of communication is through writing. I have a strong dislike of phones (in part because of my hearing-loss), and if I had it my way humans would only use their voices to make music or to shout cries of joy! If I had it my way everyone would just write to each other. The world would be a vastly different place if I had it my way...
I've always been like this since elementary school, always that slightly nerdy girl who had it in her head that she was the reason Roald Dahl came up with Matilda. I think I was always sort of slightly weird. But language helped me become less 'weird' in the eyes of my peers. Why? Because I learned to take my ridiculous made-up stories and turned that language into a means of communication with others.

By finding self-confidence on that blank piece of paper I found self-confidence in my audible voice. It took years and I am still practicing; but I have found out that when we take the effort and painful first step to reach out to others - we find that people often welcome us with open arms and eager hearts.

In light of what I just said - I figure I'd share another bit of myself with you through a poem I wrote:

It was the night of my friend J's surprise 13th birthday party. Her parents had ushered all of her friends into the upstairs area of their family-owned restaurant, the lights were then dimmed and we waited for J to arrive.  No one dared to look at anyone else, afraid that one or the other might just burst into laughter and ruin the surprise. We waited.
After a few minutes her parents led a blindfolded J up the stairs and just as they removed it we all screamed "SURPRISE!"
Following the pizza and cake the adults corralled us onto the dance floor. In fact they practically forced us over to the dance floor, not wanting to waste the money they had spent on hiring a DJ, and the fancy rainbow lights that now swam in lazy arcs around the room.

For those of you who have been following the blog, you'll remember that I, being the only person I knew in a wheelchair until age 24, had no idea how to dance in a wheelchair. And actually I didn't learn until the night before prom during my senior year of high school, and for that I give full credit to a quick Google search: "wheelchair dancing." 

So that night pre-2000, pre-youtube video, pre-Google search, I had absolutely no idea how to dance. But beyond being a girl in a wheelchair I was in the 7th grade, and like most 7th grade girls I would absolutely not be caught looking the fool in front of my friends. My plan that night was to avoid, avoid, and avoid. Slowly and painfully the popular kids paired off, most of the girls wiggled and waved their arms around in groups, and most of the boys slouched coolly on the side goofing around with their buddies.


As the dance went on I chatted with my friends, swapped gossip, probably made fun of other kids in that mean way most middle school girls do, and then I saw my friend D sitting alone by himself on the other side. Not thinking anything of it I rolled over to him, making sure to stay on the very edge of the dance floor and out of the spotlight from the glittering disco ball hanging from the ceiling. If I don't touch the dance floor, and the dance floor doesn't touch me - then I won't have to do anything weird. It was like the middle school version of cooties.
"Hi, what's up?" I asked.
D was a twin, the quieter of the two and a bit more book-ish you could say.
"Not much. Having fun?"
"Sure, yeah I guess."
At that age it hadn't occurred to me that boys and girls act drastically differently in the middle of a dimly lit room with a dance floor. Immediately I realized that this wasn't during the school hours, and we weren't sitting next to each other in science class or trying to escape from washing the lunch tables in the cafeteria. Neon lights flashed, spotlights circled all over the place, and just then a slow song came on. There was a mass exodus from the dance floor and the crowd fled to their self-assigned walls.


"Hey Sandy, wanna dance?" He turned to me and asked. I looked at him completely baffled and as disgusted as any 7th grader could.
"Ugh, no!" I stammered.
"Oh.. um okay." I remember he shrugged and quickly looked away. For the rest of that night I spent it on my 'proper' side of the room, and the next day in school everyone talked about having had the time of their lives.

It has been decades since that incident, but in between then and now I have probably done this repeatedly: pretended or hid my actual intentions in order to feel safe. There have been countless times when I have voluntarily dropped the barrier on myself, put up a front, took up an attitude because it was easier to hide than deal. Looking back on that party it's obvious that it wasn't that I didn't want to dance with him, it was because I didn't know how, didn't want to look vulnerable or caught doing something strange. In that moment I jumped towards what I felt safe and comfortable with, and at the time it was to sit on the sidelines and watch everyone else.
Years later I look on that moment as one that I regret. Sometimes we are faced with barriers and other times we latch on to barriers hoping they'll prevent any harm from reaching us; however, most often we'll find that in those instances the harm is in the distance we've created by putting up barriers around ourselves.

As a young child it was easy to get people's attention. Until about age 11 I remained the size of a small stuffed animal, and have been told that I was irresistibly adorable. Many adults were curious about the fragile seven year old who could converse with fourth grade vocabulary, but appeared to be the size of a two year old, and scurried across floors with the confidence and speed of a fourteen month old baby. Growing up I remember there was usually someone rapt with attention as my parents patiently explained my curious stature and why "the whites of her eyes are so blue." Among adults I had become used to being in the spotlight, accustomed to being listened to because of what I looked like and what I had.

Fast forward fifteen year later and that seven year old is not much taller and could easily be mistaken as a 12 or 14 year old teen. Except that at this point I had just finished school, had a college degree and was about to start my first "real adult job." It was an AmeriCorps position where I was doing a year of service at a community college in Boston. A real adult job that had real adult responsibilities; I had my own office, extension, email - the whole nine yards at a place where looking cute would no longer matter to anyone.

My job was to put together a mentoring program that served first-generation community college students. Most of the students were older than myself, some had had years of life experience, some were veterans who were not much older than myself, many were parents and they were all at various places in their lives but knew that they wanted some guidance to help steer them in a direction toward success. Suddenly the spotlight I was in was not so much because of what I looked like, but more because of what I was asked to do. At least I knew that much was true; however, I found out quickly enough that it would  take awhile for this truth to sink into the community that I was serving.
Who is this young person that is suddenly trying to put together a mentoring program for us? And what does she know about how things work here? She's so small and soft-spoken our students aren't even going to listen to her. These were some of the question I was up against and the attitudes that were pervasive for the first half of my year of service.
I quickly realized that things were different now than they were for me when I was a kid. I needed people to pay attention because of what I had to offer. I wanted the attention away from myself, and instead on the need that I was confident that I could meet. I would need to take on more of an authority figure than I was used to, and somehow fish out of thin air at least 24 more inches to add to my height. Needless to say I was well aware that I had my work cut-out for me.

After months of research, interviewing, and performing assessments on students and staff members to figure out what kind of mentoring program would be needed, it was time for me to present the findings. I would be presenting to the school's Board of Trustees, the President of the college, other members of the Cabinet, and various faculty members. Going into the presentation I told myself this is it. I thought to myself this is my chance to own up to the work that I've done because in this presentation nothing else matters, nothing else should matter but what's best for the students at the college.
That day I was still 3ft tall, as tall as I had been since age 11 and as tall as I will ever be. I still had a pip-squeakish soft-spoken voice, I was still in my first "real adult job," and was still the youngest employee at the school. Not much had changed except that by putting the needs of an entire population of students before myself, I grew to be taller than everyone else in that room. It was me who had the upper hand in that moment, I was the one who was offering a real solution, and while it was nerve-wracking for me to defend my findings to the Board of Trustees - when I responded I realized that I am the one who is speaking with the most authority and knowledge on this topic.
Since then whenever I am confronted by another moment where I might be physically 'dwarfed' by others, I look to what's at stake --

Authority in a Small Package:

• It's not about you. People look to leaders who are comfortable with themselves and are confident in varying situations. I have learned that if I make it about how nervous I am or how diminutive I feel, then that's all folks will see. But if I make it about what I can offer and what I know, I can easily switch the focus away from my more vulnerable aspects. 
• Authority is only gained with respect. And as we all know, gaining respect takes time. For authority to work you need an audience that will listen, and people will only listen if they respect you. Build respect and trust, thankfully these aren't things that require any great height or physical strength to acquire.
• If you doubt yourself then others will follow suit. When we think about why we don't think we're capable, is it because of what we're telling ourselves? Or is it because what others are telling us? When we tell ourselves that we can't give the speech then it's not going to matter how others perceive us because already we've talked ourselves out. But when we tell ourselves we can give that speech, the way others perceive us can become fodder for us to prove wrong. And who doesn't like a good ol' "Hah! I WAS right and YOU were WRONG!" 
• Eye-contact. This is one of those tricks that I have had to practice a lot. Just because I am short doesn't mean that I need to physically look-up or look-down at anyone. By matching someone's eye-contact we are already beginning to present ourselves to be capable of playing on the same playing-field. It also conveys a sense of seriousness and an air of 'adulthood,' when we are naturally able to do this.