Showing posts with label disability labels. Show all posts

As one of the lucky ones who managed to wave a red flag with a large question mark while in womb, I probably don't realize how lucky I am (or was). The doctors who caught sight of fractures and healing fractures in an ultrasound were alerted that something was up. From there I imagine a plan was set into place, possibilities were considered, tests were proposed, and above all caution was urged towards its slow plodding momentum. Mere days after I popped into the world that red flag had toned down its alarm, there was now a name for the little piece of land I claimed: Osteogenesis Imperfecta type III.

Having spoken and met with many other O.I.'ers I know that this isn't the experience for many of you. I have read the other blog posts about babies who are taken away from parents accused of child abuse. I've seen the frantic facebook posts in many of the O.I. groups from parents, grandparents, aunts & uncles of those crowd-sourcing for resources to come to a diagnosis faster. Heard from parents about the months their family spent waiting for the results from the battery of tests, realizing that any result would bring some relief. All of this for the sake of a diagnosis, for clarity, for a label, for a definition, for answers that are a little less vague.

When people ask me if it matters whether or not they refer to "the thing that you have" as a condition, disease, illness, syndrome.. I am quick to respond "yes it matters a lot to me." Because of all that my parents went through, because of all that other babies with O.I. have gone through - yes it matters a lot to me.

But now that I am older and have grown out of the confines of those bullet-point symptoms of O.I. type III, I sometimes wonder if the labels only matter a lot to me because those around me have made it matter.
Something tells me that as a day old, or even as a one or two year old infant -- the idea that my upbringing was wrapped tightly around the fingers of a diagnosis was about as important as saying "excuse me" after I was burped. I simply had no clue. O.I. type III was important to my parents, my medical team, my care takers and those who loved me. Why? Because they were the ones who were responsible for my safety and wellbeing. And it probably wasn't until half-way through elementary school that I had some idea of why I should talk to my classmates about my differences. It was important to me because my teachers, classroom aide, and my parents said "this is a good idea for you."

To be totally honest, O.I. type III probably wasn't something I really considered a part of my identity until I began this blog in May of 2011. Up until that point it was just a way to take care of my medical needs. Now? Now I think it's something I'm fiercely over protective of not because I'm afraid of losing it, but because I know there is so much I have yet to learn and I stubbornly want to do it all by myself! (Picture the first time you are baking your family's secret recipe. You've done it so many times with your mom, your dad, or your grandparents -- but this time you demand total control. My family has done enough and all that they possibly can, now it's my turn to finish this off.)

Let's also keep in mind that for me the label O.I. type III and the label "disabled adult" are two very different concepts in my mind, at least for where I am right now! There are distinct values and experiences that define my identity as someone with O.I. type III, and a wholly separate experience that define my identity as someone who is disabled; what's important in this instance is that 90% of both of these identities are shaped by my own experiences, and how I have interpreted them. While there are many areas where these two identities overlap I think there is a lot of personal pride that I'm comfortable enough with myself, finally, to identify strongly with both.

This isn't meant to belittle the value of a medical diagnosis. It also certainly isn't meant to influence anyone in one way or another, this is just me trying to make sense of the jumble that is me inside my own head; and to think that this is only one slice of all there is to me!
But I will say that for the parents and family who are raising the child with O.I., go ahead -- cling to the diagnosis and consider everything that your child's medical team believes is best. Cling to those definitions and labels, do whatever you have to do to come out the other side of tomorrow with your sanity intact... but realize that eventually, if everything goes right, your job will come to an end at some point and the diagnosis won't be up to you to cling to anymore. Instead it'll be your child's decision to cling or mold, or set aside, or even toss it away. I don't know anything about parenting, it's true, but I do know that when that happens you've done something right.

In every Fracture Free Friday post I will answer one question that is submitted by a reader. Please note that these questions do not have to be OI-related and can cover any topic that you'd like to 'hear' me babble about. Send your questions into oi.perfect@yahoo.com   
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Fracture Free Friday Q: Osteogenesis Imperfecta is under the umbrella of "dwarfism". Do you consider yourself a Little Person and how do those with OI view themselves in the LP community? 


A: I thought this was an interesting question because I had never thought about it before, but before I begin my response I must note that I'll only be responding from my own perspective!
Although I do consider myself to be a little person, I consider myself having OI first and the short stature is a symptom of the brittle bones disease. I must admit that I'm not very knowledgeable of the LP community and have only really "begun" to get involved in the OI community (with the start of this blog). Even though being a little person affects my daily life more than having OI does in my mind I affiliate more with OI than dwarfism. It's weird because I probably struggle more with being much shorter than needing to be extremely careful (at this point in my life), when I was younger this was the opposite; it was easier being short as a child, but because I was still learning what my body could and could not do I had to be more cautious. 
As I was thinking up a response to this question over the past couple of days I tried to liken it to being hard-of-hearing. On forms that request listing my physical disabilities I rarely remember to put down the fact that I am hard-of-hearing. I think that similarly to being short statured, I view both as symptoms of the OI but not the main lens from which I am looking through most of the time. Maybe it's because so much of the focus in how I have managed my life has been centered around learning how to be cautious, and managing a fragile existence? Maybe it's because I associate most of my pains and hurt (the fractures) as the more 'disabled' aspects of myself? I'm not really sure, to be honest. 
I can understand that telling strangers off the street that you are a "little person" instead of going into the whole "osteogenesis imperfecta, a brittle bones condition.." shpiel, but I do think that if I had to go with a label I would prefer to tell people that I have brittle bones. I think it's something that better represents my physical limits and capabilities, and also lets others know that they need to be careful - which I think is the most important thing. 


So readers, I am curious to know! Do you consider yourself to be a Little Person? And how do you see yourself in the LP community? Leave your responses in the comments section please!