Living with OI

Posted on October 01, 2006 at 04:45 AM

This next story was submitted by Marelise Prinsloo, who lives with OI, and is a writer for Audacity

"Living with OI" is something I didn’t thing about a lot while I was growing up. I am the only one in the family who has it, in my entire family ancestry there hasn’t been another like me. It seems even here, where I live, I am the only one. I never talked about "OI", my mother would just say "brittle bones" when I was little and try to explain to others. I grew up mostly thinking I was just like everyone else. I knew there were things my friends could do that I couldn’t, but that wasn’t such a big deal. It was only when I was grade 8 that it was clear I was disable and very much not like the normal people around me. That year my parents decided it would be best I attend a special school when I went to high school, since they figured I wouldn’t fit in with a normal high school. The decision proved to be disastrous, I finished one year in the special school and then went back to a normal high school. The problem with the special school was that the children there were too different than anything I had ever experienced.

I was brought up to be independent, to be ambitious and to work hard. The disabled children in that school failed year after year, even though the educational standards were way below average. They had no ambitions; they knew there was nothing waiting for them out there. When I attended that school, I didn’t just have OI, I was disabled. After that year, it took a while for my self-image to recover. I had to remind myself that I’m not like those kids, who are afraid to go outside, to confront normal people.

It has been a while since that year; I am now a qualified graphic designer and illustrator. I have a wonderful boyfriend and a good, normal life. I have OI, yes, but I am not disabled. I am in a wheelchair, yes, but I am not disabled. Disabled people are those who I left behind at that school. Hiding behind walls, afraid of what the world might do or say.

As I grew older, I wanted to find those who are like me. I found many of them through the internet and some of my good friends I found because of an online magazine called Audacity Magazine. For the first time in my life I spoke to people who were almost exactly like me, but living on the other side of the world. I became a contributing writer for the magazine and could express thoughts and emotions I had been having with thousands of other people. I realised I was not alone in this world; other people have the same fears and experiences as I do. I am not normal, but I am not disabled. I am somewhere in the middle, between two very different worlds.

In my country, Apartheid ruined lives by keeping different cultures apart by force and discrimination. The Struggle overcame in the end, but people are still putting the pieces of their lives together. Between the normal and non-normal worlds there is a different kind of apartheid, not upheld by force, but by socially indoctrinated beliefs. Beliefs that is peaceful in nature, but just as destructive. OI is just something that I have. Yes, it makes me different and sometimes I wonder how things would have been had I not had it. But it is the stigma of being disabled that I have had to struggle with.

Thank you Marelise for sharing your story.

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