Growing Up in a World Not Built for Us

I grew up as the younger sibling to my brother, who has Lennox-Gastaut syndrome. Starting when my mother was several months pregnant with me and he was already three, his life was shaped by hundreds of seizures a day. The milestones he'd reached so far were reversed, and it was clear that disability would be part of his life forever. Because I was born after it all began, I never knew him any other way.

When I was very little, I was competitive and jealous—as siblings often are. But as I got older, something shifted. I began to recognize the ways in which he was growing—or not growing—differently than I was. I realized that my body and mind were changing in ways his wouldn’t. And I realized that the world expected certain things from me that it would never expect from him.

That was the beginning of my protectiveness.

My brother had needs that weren’t like other kids’ needs, and many adults didn’t know how to recognize or respond to them. So I learned to translate. Sometimes literally—speaking for him—but often more subtly: anticipating, adapting, making sure situations unfolded in ways that preserved his dignity and comfort. Or just doing things for him myself, because it was simpler than trying to explain.

I learned early—and clearly—that the world was not built for him.

Not the bathroom stalls with no room for someone assisting another person.
Not the utensils that required fine motor control.
Not the social conventions that assume quiet, predictable behavior.
Accessibility wasn’t just lacking. In most places, it wasn’t even considered.

And because I was with him almost everywhere all the time, it wasn’t built for me either. My “normal” childhood was learning how to navigate a world that didn’t know how to include us. Figuring out, moment to moment, how to make space where there was none.

So when I developed a couple of diseases that limited my mobility later in life, I already knew the assignment.
It was familiar terrain.

It was hard, yes—really hard. Losing mobility changes your relationship to your body, your independence, your environment. Constant pain and fatigue change how your move through the world from moment to moment. But I wasn’t starting from scratch. I had grown up studying adaptation in real time. I had already learned how to push back against environments that did not want to accommodate you. I approached my own access needs the same way I had approached my brother’s: with uncompromising determination. If the world didn’t make room, I would make room.

And that’s part of how AEGIS ARMOR was born.

When I began traveling with my wheelchair, I saw how air travel treats mobility devices—how easily they can be damaged, how quickly a trip can be derailed, how much independence is at stake. I saw the same pattern I learned to recognize as a child: systems that weren’t designed with us in mind.

But I also carried the skills I learned growing up:
Observe the problem.
Understand the need.
Adapt the environment.
Make something better.

Aegis Armor is not just a product.
It’s a continuation of a lifelong practice of refusing to accept that exclusion is inevitable.
It’s built from love.
From stubbornness.
From experience.
From the fierce belief that people deserve to move through the world without fear of losing their mobility, their freedom, their dignity.
Because I learned early on: if the world isn’t built for us, we build anyway.