OIF Conference 2012: Brain Dump Reflections

My brain is still tingling and teeters on "About to Burst" levels after coming back from my first OIFoundation Conference yesterday. I like to think that most of my posts can stay fairly focused on one topic - but I'm warning you now: This is going to be all over the place in order to best capture the all around wonderfulness of this weekend!

Here we go:
As I'd mentioned mentioned earlier this was my first conference. I had flown in from Boston with two of my pals, D & K on Thursday. Though I had traveled alone before with my power wheelchair, I knew that this was going to be a new experience with three power wheelchairs. All of which were different models and that many more ways to turn on/off, disengage the motor, recline/tilt, etc. I felt bad for the flight attendants and folks getting our wheelchairs on to the plane.. but I think this is a topic that could be a blog post all by itself.

On the plane I thought about what I'd heard from others who had attended conferences before. I thought about why I was going, what I hoped to get out of it, and of course I thought about the blog and my readers. Many of you know that when I began this blog a little over a year ago, those first sentences were my first foray into the disability community - and specifically in the O.I. community. Outside of my small circle of friends with O.I. in Boston, I really haven't interacted with others who shared my same collagen mutation! Sure, we'd see each other while waiting for my orthopedic doctor - but we'd awkwardly eye each other from the corner of our eyes, uncertain about what to say, or how much pain the other person was in due to a fracture.
While perusing the program I knew that conference would be different from my social interactions with friends I was already comfortable around. I knew that this would be a setting outside of the hospital walls; and that though having O.I. was our common bond - we weren't there just to talk about fractures and how to get pants over a spica cast. Though I'm still processing what we were there for, here are some initial thoughts I have:

We were there to get more information from specialists, officials, non-officials, from our peers, and cohort of other O.I.'ers who may be going through a similar life stage. Inherent in that we were also there to share information, experiences, tips that worked, and advice on what didn't work. But beyond those concrete interactions, it seemed we were also there to be in each other's presence knowing that someone else has shared our struggles, victories and giggles. There is someone else that knows what it's like to be assumed you're a toddler, or knows what it's like to not be able to connect with your parents, there was someone else who had that carefree willingness to do something totally dumb for our bones because we knew it'd be totally worth it. So as I sat in the hotel lobby on Thursday, almost hiding behind a pillar watching the other wheelchairs and O.I.'ers check in for the weekend - I was at first incredibly intimidated and overwhelmed.
Oh my god, she looks exactly like I did when I was four. Oh wait, is she even four? Maybe she's older? Holy crap, there is going to be a ridiculous line in front of the elevators. Wow, I'm actually going to meet readers who have been reading my ramblings for a year - what the hell am I going to say to them? These are all people who have fractured, who are familiar with the cozy heat of a fresh cast, they know how liberating flexing a free limb for the first time feels like... but before their fractures and beyond having O.I. these are my fellow human beings. We are here together, to enjoy this moment, and to relish in what brings us together while still being utterly different individuals!

That was more or less my thought process for the first three or four hours. In my personal everyday life O.I. is usually the last thing on my mind, unless of course I have a fracture. I wasn't sure whether or not I would be able to mentally and emotionally handle the inundation of O.I.'ness for four consecutive days; but as the conference began and I attended sessions - I was surprised that I did not feel like I was being dipped into a pot of O.I. world and swirled around in a crazy mixture.
Yes, I did sit among people who were around my height and had the same faded scar tissue where rods had been inserted. Yes, we crashed and bumped into each other's wheelchairs. Yes, our barrel rib cages and small features that I generally recognize as O.I. characteristics surrounded me -- but I never once thought you're at a brittle bone convention of fellow freaks. I saw it as, you're hanging out with people who look, sound, and know what your basic life experiences have been like - this is what the majority of your friends take for granted (they probably don't even really realize it). I also didn't feel like I was getting hit over the head by all of the O.I.-ness because I didn't have to explain myself to anyone about the basics of having brittle bones! When we are in the majority, there are assumptions that we make about one another that makes communicating and simple human interaction so much easier... and for the first time in my life, I now know what a level playing field is like. It's natural, it's care free, it's efficient and easy. I also understand now what it means for it to be a privilege. A privilege that I hope everyone, O.I. or not - is able to experience or at the very least become self-aware of!
No 'special accommodations' had to be made so I could participate in what everyone else was doing. There were no prior arrangement that needed to be explained for or put in place. No one had to be trained on my physical limitations, I never had to talk to a presenter beforehand to make sure they knew I had a hearing-loss. No one had to kneel down next to my wheelchair to hear me speak or look me in the eyes. Prior to this experience I hadn't conceptualized, or was not consciously aware how much of my interactions with non-OI'ers is drastically different from when I interacted with people at conference! The experience of being in the majority gave me a taste of what feeling empowered by my identity as an O.I.'er felt like. Specifically, that it's not something I have to constantly accommodate or work three times as hard to "make up" for.

I won't talk about the sessions I went to in this post, I'd rather that content be used for future posts on specific topics -- so I'll ramble a bit about the people I met. And by that I mean, my readers.

For those of you who don't already know, I'm a shy person. I'm also a super nerd and am a somewhat socially awkward geek around people I don't feel comfortable. (You'll know if I'm feeling socially awkward when I bring up something I read in an academic journal that has maybe one sentence to do with what we are actually talking about). On the way to the conference I thought, gee when I meet a reader of the blog, what am I going to say? Do I just say 'thanks, you're awesome for putting up with the verbal vomit?' Do I say 'I can give you the names of far more interesting blogs if you need something better to do with your time?' Or maybe I should say 'how much should I pay you for reading my ridiculousness?' 
It got me thinking back to why I have this blog to begin with. I've always known that writing is the most comfortable way for me to communicate with other people, but over the year of keeping up with this it's become more than just a fun hobby. I know that I have an impact on my readers from the messages you have sent and the comments you have left. I know that people know exactly what I'm talking about but had not been able to express it in the way I have fumbled to do. But when I met people, or awkwardly stared at name tags to seek readers out... it was something else entirely. I can't even put into words what that experience was like!

"You're Sandy right? The blogger?" (If I could get a dollar for every time I heard that my student loans would be paid off). And then there was "You're the blogger right? Are you presenting? Which session is it?"

But all kidding aside - again my readers come through for me! You not only take the time to read my verbose word deluges.. but you're also such humble, fun, quirky, incredibly nice, patient, and most of all endlessly supportive. Thanks for contributing to my first OIF Conference! Thanks for sharing in my moment of feeling self-empowerment as an O.I.'er. Thanks for silently understanding when I feel vulnerable, and grinning when you know I feel on top of the world. My communications with my readers have had its ups and downs over the year of keeping this blog; but never had it been so effortless and unique as when I was able to shake your hand, meet your child, groan about school, give you a hug, share a drink, sing along to the ukulele, or simply smile in passing as I remember he was the one who sent me that message about.... Your staggering humanity, willingness to love, and the benevolence you showed me is something I hope to aspire to have and spread to others.

*In a future post I will also talk about the more than too-fun times I had with the new friends I've made*

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2 Responses to OIF Conference 2012: Brain Dump Reflections

  1. Sandy, you made me cry. I'm so happy that we finally got to meet face to face. I know how much you struggle with things but I saw you blossom with the conference. Each time I saw you, you had a bigger smile on your face. I KNOW you got to connect to others and I know that was so important (and hard) for you to do. You've come a LONG way and I want you to keep on this path. You inspire me and I thank you for that MY FRIEND.

  2. Sandy, I miss you already! Thank you for the lovely and insightful post - I can't wait to read more and to reconnect at the next conference (or hopefully, by some twist of fate, before then!). Let me know if you're ever coming to California - I would love to host you (and we can develop some of our prize-winning schemes - OI couch-surfing, for example?). Also, I started a document of conference thoughts and would love to send it along to you - it might be cool and useful to OIF to accumulate some specific feedback from people within our age-group? Just a thought.

    Much love!


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