They Just See Emily

Today's post is a little late. I was going to write it last night and schedule it to be published at 8am (central) this morning, and it never happened. I got distracted with meetings and other projects and I just didn't feel like writing.

Seven days into Blog Every Day in May and I already have the "do I have to write today?" bug. This can't be good.

Anyways.

Many of you have probably heard of the Kid President. If you haven't, I'm sad for you.

You may have seen this video floating around the internets:

This kid is pretty awesome, right? Well, you may or may not know that he has Osteogenesis Imperfecta (OI). 

AKA- the same thing I have. In case you're behind, you can read all about how I break here.

Yesterday, Kid President posted on Twitter that yesterday was Wishbone day. A day for OI awareness and everyone was supposed to wear yellow.

I was already dressed and in my office by the time I got the memo. Needless to say- I wasn't wearing yellow. Oops.

For someone with OI, I'm pretty uninformed and disconnected to the OI community. Let me give you some background story.

When I was a baby, no one was really sure what was wrong with me. My orthopedic surgeon was actually really scared of me. Then our family doctor referred us to another doctor, Dr. Tachdijan (Dr. T... cause that's a mouthful). He knew exactly what I had. I think I remember my mom saying he had around 6 OI patients  At the time, OI wasn't very well known and we thought that was A HUGE amount of patients. 

Growing up, I was the only kid with a disability/handicap at my small Lutheran school. I was one of the few at my public high school as well. Of course there were struggles and challenges with this, but we made it work. Everyone adapted and while there were bumps in the road, it worked.

When I got older, I later went to Shriners hospital where they had hundreds of kids like me. They had yearly clinics, conferences, groups, etc. 

I remember we tried going to these a couple of times. I was in junior high. I remember I didn't like it. In all honesty, they kind of freaked me out. There was a speaker and she had a very mild form of OI. (She even mentioned that she went skiing... most OI kids can't do that.) Her husband had OI and her kids had OI, and they were this big happy family of people with OI and they all broke their legs together.

It was weird.

Because I don't know about other people... but when you're 12 and you keep breaking your legs, it's not something you're was too happy about. At least I wasn't.

I think even my mom admitted later that she thought it was weird too. We kind of gave up on joining those types of groups after that.

Later in life we've talked about this. I think my mom felt guilty for a little while for not helping me connect to other kids who were like me. When I see things like Wishbone day, a tiny part of me feels bad too because I had no idea that was going on.

But then, the rest of me takes over.

I'm really glad I'm not connected to disability/OI/handicap/little people communities. Because that's not who I am. Yes, my bone condition is PART of who I am. It has helped shape the person I am today and who I will continue to be. It's always going to be there and it's a HUGE factor in my life.

But it's not the only thing in my life.

The idea of sitting around with people who are exactly like me and talking about breaking bones and being short all of the time sounds like torture. 

I have no problem talking about my story. In fact, I was able to share it with some people this past week and it was pretty cool. I love it when people ask me questions about it and I can explain things to them so they understand more. (In my world- everyday is OI awareness day!) However, I love to hear their stories too. Because they are different than mine.

I love diversity. I love making a group diverse. I love going places and seeing people of all different walks of life. I don't want to hide in a group of people who are exactly like me. It's like saying our physicality is the most important way to relate to someone. 

I hate that. I would much rather be able to relate to people because of books, movies, ideas, classes, education, events, etc. In fact, I usually relate to people who are "normal" (whatever that means) than I do to people who have disabilities. Because that's honestly how I see myself. 

Or maybe I see all of us as weird. Which is awesome. 

I have no problem with awareness days, joining communities of people you can relate to, and rights for the disabled all that jazz. There is a lot of benefits to those things and people who are part of that, power to ya.

But I'm glad I don't overly connect to those things. Because for the most part, when I build relationships, people no longer see me as "Emily the short breakable girl."

They just see Emily.

If you do have any questions about OI, check out this site. Or feel free to email me with any questions. I'm more than happy to talk to you about it!