When you grow up as the sibling of a disabled person, there is often an unspoken expectation that your story should fit a specific script. Society tends to prefer these narratives wrapped in a neat, sentimental box: either a story of quiet tragedy or one of selfless sainthood. But forcing my experience into either of those moulds would be fundamentally untrue to my brother, to me, and to the relationship we’ve built. My experience has always existed somewhere between those two extremes. Life could be incredibly serious at times, but it was also full of ordinary family moments.
I grew up as the oldest of three siblings, with two younger brothers. My middle brother was born with a rare, life-threatening heart condition, is autistic, and grew up with complex learning and processing needs. At two and a half years old, I was simply too young to know any other way of life. Medical risks, hospital visits, and helping him navigate daily routines weren’t dramatic revelations to me; they were just part of growing up. Because it was my normal, I didn’t view my life as different.
It is only now, looking back through an adult lens, that I can fully appreciate the reality of what we navigated. I can see that my peers weren’t living with the same uncertainties, and that a childhood which felt ordinary to me looked very different from the outside.
Yet that doesn’t mean our relationship felt defined by those challenges. One of the things I find hardest to explain is how naturally the serious and the ordinary existed alongside each other. At home, our relationship remained completely unfiltered. We bickered over the dinner table (a lot), fought over the TV and clashed like any other siblings. Disability was part of our lives, but it wasn’t the lens through which I saw him. He was, and still is, my brother first.
I know every family’s circumstances are different, and every sibling relationship is shaped by its own experiences. My story is only one among many.
For us, there was always an awareness that my brother’s heart condition meant the future was uncertain. It wasn’t something that defined every day, but it was always part of our reality. We knew his health was serious while still getting on with all the ordinary parts of family life.
Perhaps that is why I feel so grateful for where we are today. Seeing my brother now, living more independently, studying towards a degree and building a life that is his own, is something I never take for granted. When he was younger, there were times when we couldn’t know what the future would look like, and that makes seeing the life he has built now all the more meaningful.
Our relationship has evolved as we’ve grown older, but at its core it remains unchanged. I am his sister, and our bond has always been built on far more than a diagnosis. Disability is part of our journey, but it isn’t the whole story. At the end of the day, we’re still just siblings who know exactly how to wind each other up.
