At Eye Level Again: Rare Disease Month and the Scooter That Changed My Everyday.

February is Rare Disease Month. For most people, it’s a date in the calendar, a hashtag, a campaign they might scroll past. For me, living with Ehlers-Danlos Syndrome, it’s just… life. Every month. Every week. Every day.

Rare Disease Month doesn’t make my condition rarer or more visible. What it does do, though, is give me a reason to speak a little louder about the realities of moving through the world in a body that doesn’t play by the usual rules.

A huge part of that reality is mobility.

Choosing Between Fatigue and Being Seen

Mobility aids are meant to help. But for a long time, I’ve felt like I have to choose the least damaging option, rather than something that genuinely supports me.

With a rollator, I can technically walk further. But there’s a cost.

If I have a rollator, I become easily tired because I’m constantly pushing. It’s hard work. Even short distances add up – and by the time I get where I’m going, I’ve already spent most of my energy just getting there.

Then there’s a wheelchair. It saves my joints and my energy, but it comes with a different kind of exhaustion: the social kind.

If I’m in a wheelchair, I often get stepped over or bumped into and treated as a lesser person because I’m not at eye level. People talk over my head, literally and figuratively. I’m there, but I’m not really seen.

That’s the quiet calculation a lot of us with rare diseases make almost every time we leave the house: do I choose pain and fatigue, or do I choose to disappear into the background?

Meeting the Supersmith 3Scooter

This year, something shifted. I was introduced to the Supersmith 3Scooter, and it wasn’t just another piece of equipment to trial. Instead, it felt like the answer to a question I’d been asking for years.

I was lucky enough to take the scooter for a spin at Cabot Circus in Bristol. 

The first thing that struck me was how simple it would be to live with. It folds in under ten seconds. It weighs around 20–25 kilograms. The battery gives me about 15 kilometres of range, and the top speed of 4 miles per hour is enough for real life: pavements, shops, appointments, the school run, seeing friends.

But the real difference for me isn’t the numbers.

It’s the seat.

The adjustable height means you can sit much closer to my natural standing level. I won’t be down at everyone’s waist or shoulder. I’ll be back at eye level. That sounds cosmetic, but it changes everything about how people interact with me — and how I feel in my own skin.

I’ll no longer be looking up at the world. I’ll be in it.

Built Around Lived Experience

What I appreciate most about the 3Scooter is that it’s clearly been shaped by lived experience. It’s not a generic product with a disability label slapped on; it’s been thought about properly.

The self-levelling system is designed to keep you stable. The folding frame means it can go in the boot of a small car. The removable battery makes charging easier. It’s been designed for real days, not hypothetical ones: uneven kerbs, busy pavements, tight spaces.

As someone with a rare disease, I’m used to adapting myself to environments that weren’t built for me. This feels like the opposite: something that has been adapted to us.

Not Trying to Be Everything — Just Exactly What I Need

Like any mobility aid, the Supersmith 3Scooter has been designed with a specific kind of day in mind.

The speed and range are tuned for everyday urban life rather than off-road adventures or steep hills. It’s happiest on pavements, in shops, around town, at events. And that’s exactly where most of my energy gets spent.

In the future, I’d love to see things like more weather protection or options for extra range. But instead of feeling like limitations, those feel like next steps — building on something that already works, rather than fixing something that doesn’t.

For where I am now, it will give me what I’ve been missing for a long time: independence and presence. I don’t have to trade one for the other.

What It Really Gives Me

On paper, the 3Scooter is a compact mobility scooter with a clever stability system, a foldable frame, and a decent battery. In practice, it’s much more personal than that.

It means I can go out without planning my collapse point.

It means I can join conversations instead of hovering on the edge of them.

It means I can navigate crowds without being trampled, overlooked, or spoken down to.

And yes — it will improve my life in practical ways. I’ll be less tired. I’ll be able to manage more in a day. I’ll have more control over when I rest, instead of my body deciding for me. But it will also improve my life in ways you can’t measure: confidence, connection, dignity.

Rare Disease Month, Every Month

Rare Disease Month is often framed around awareness and statistics. For me, it’s about the tiny, tangible shifts that change how I move through the world.

Being a Community Ambassador for Supersmith isn’t about saying this scooter is a magic fix. It isn’t. Ehlers-Danlos Syndrome is still there when I get off it. My joints are still fragile. My body is still mine, with all its complications.

But this scooter means I won’t have to fight quite as hard to exist in public spaces.

It means I won’t have to choose, every single time, between pain and invisibility.

It means I can go out in the world - rare disease and all - at eye level, on my terms.

And in a month that’s meant to spotlight people like me, that feels worth saying out loud.