Written by Malene Sillas, OIFE Board Member. 

Growing up from childhood, becoming a young adult, I’ve always felt that whatever I do, it feels like I’m the first person to do it. I remember that the first time I felt that way, I was in my second year of high school. The whole class was going on a school trip which had been hyped up for us since we started our first year. The class was gathered, and our teachers were presenting to us, which country we were going to. It ended up being Malta, and we were all ecstatic – going to a new country with all our best friends. Besides seeing churches and museums with our teachers, most of us just looked forward to the partying.

After we were told the news, the teachers pulled me aside, they told me, that it wasn’t sure that I was able to come, because the accommodation that was the cheapest had no elevator and loads of stairs. I remember just feeling this huge sense of unfairness. That was my first time speaking up for my rights, and after threatening them with the UN’s convention on the Rights of Persons with Disabilities, I was able to go.

I’ve since then wondered how much easier my classmates and peers have had it growing up. Because besides the normal struggles and worries about fitting in, getting good grades, and making friends, there was just this huge mountain of questions and worries I had to overcome besides all normal teenage-young adult worries. I’m not one to complain, but my point is rather that growing up with OI, you have to learn to speak up besides learning how to drive, how to solve complicated math problems, and how to fit in. It’s just as important.

You have to become an expert in navigating the system, talking to doctors (which is a whole story in itself), and so much more that none of your ‘able-bodied’ friends have ever even considered as a problem. To be honest, I think my parents gave me the greatest gift of all by becoming a member of the Danish OI society DFOI when I was a baby. Fortunate for me, we were a large group of girls born with OI within a few years. And even today it means everything to have these friends to talk to about the small struggles and worries that come with this OI-life. My OI friends fully understand me and have good inputs on how they handled similar situations.

This is the core of why I believe that OI-organizations are the most important thing that ever happened to me. I think that people who decide not to participate in national OI-meetings, miss out on so much, even if they only have a very mild OI. Because no matter what, you’re going to face challenges that nobody besides people with OI knows about.

To me, speaking up about things that were unfair, was something I over the years came to terms with. Mostly because I started to face them early on. But what came as a surprise for me, was the fact that I wasn’t ‘done’ with learning about how to speak up.

A few years ago, I noticed that the thing that I was struggling with, and had been for some time, was speaking up about my challenges and worries to my ‘able-bodied’ friends. For a long time, I was super conscious about talking to my ‘able-bodied’ friends about these struggles, because my worst fear was, that they would look at me as their complaining disabled-friend and not as me. And it even got so bad that I lied about what I was doing on a weekend if I was attending an OI-related event. I didn’t want to become my disability. I remember quite vividly how I was telling my friends how I was going to a boring conference, when in reality, I was going to a youth event. This is ridiculous, especially if you have ever attended an OIFE youth event. Then you know that it’s not a boring conference. I’ve since been working on this. But it made me realize that learning to speak up is never something I’ve finished learning – it’s an ongoing journey.

This editorial was first published in OIFE Magazine 2-2023 which you can download here.