Japan with ALS: My Honest Experience as a Wheelchair User

 Japan had been on my bucket list for years.

The food, culture, famous landmarks, and also I wanted to see one of my favourite artists perform live. As a lifelong Mariah Carey fan, attending her concert in Yokohama was one of the main reasons for the trip. After months of planning, we finally made it to Japan.

In many ways, the trip was two dreams rolled into one: visiting Japan and seeing Mariah Carey. The concert was everything I hoped it would be. The travel itself? That was a little more complicated.

If I'm being completely honest, it was one of the most stressful trips I have ever done. Would I do it again? Absolutely. Would I do a few things differently? Without a doubt.

Planning Was Everything

One thing that helped us enormously was preparation. Before we left, I wrote everything down in chronological order. What needed to happen at the airport, where we needed to go, and what to expect at each stage. 

Even with months of planning, I think we only completed about 60% of the itinerary I had carefully put together. Travel looks very different when you have ALS. What seems achievable on paper can feel overwhelming in reality.

What We Got Right

We contacted the airline at least a month before departure to let them know I would be travelling with a power wheelchair and spare batteries. The boarding process ended up being remarkably smooth, which was a huge relief.

Staying close to train stations

This was probably one of the smartest decisions we made. Every hotel we booked was within a five-minute walk/roll of a train station. When you rely heavily on public transport and wheelchair accessibility, those extra few hundred metres matter more than you realise.

Preparing for the weather

Japan's weather can change quickly. I bought a wheelchair rain poncho from Temu that covered both me and my wheelchair. It worked brilliantly and saved us more than once.

Using technology

Google Maps and Google Translate were absolute lifesavers. 

Being realistic about food

Many restaurants were either inaccessible or extremely cramped. Rather than constantly searching for somewhere suitable, we often bought takeaway meals or ate in shopping mall food courts. It was practical, accessible, and much less stressful.

What We Got Wrong

Not every decision was a good one. Choosing a cheap hotel was probably our biggest mistake. We were tempted by the price and booked a hotel that technically claimed to be wheelchair accessible. My wheelchair barely fit through the doorway, there wasn't enough room to turn around properly, and the bathroom was far smaller than expected. To be fair, nobody misled us. We simply prioritised cost over accessibility and paid the price for it.

Underestimating train stations

I knew Japan's train stations were large, I just didn't realise HOW LARGE. As a wheelchair user, you cannot simply arrive and board the train. Station staff need to organise ramps and assistance. Sometimes help arrived within minutes and sometimes we waited over thirty minutes. The lifts were often located far away from the platforms, which added even more travel time. Even though I was sitting in a wheelchair, I still found the process exhausting.

Underestimating the crowds

This was our first visit to Japan, so naturally we wanted to see many of the famous attractions. What I wasn't prepared for was the sheer volume of people. The sensory overload was real. Looking back, I wish I had packed noise-cancelling headphones. They would have made a huge difference in some of the busier tourist areas.

Yokohama, Tokyo, Osaka, and Kyoto

Originally, we planned to explore smaller towns outside Tokyo. Once we arrived, we quickly realised that multiple train transfers, station navigation, and waiting for assistance would be too exhausting. 

There is enough in Tokyo alone to fill several trips. Part of me considered staying there for the entire holiday. But I had always wanted to experience the Shinkansen, so we took the risk. We flew into Tokyo, spent time exploring the city, then travelled to Osaka by bullet train, which took around three hours. We also took a day trip to Kyoto before eventually flying home from Osaka.

For us, it was worth it.

Out of all the places we visited, Osaka was probably my favourite. The crowds weren't necessarily smaller, but the city felt different. A little more relaxed and a little easier to navigate. 

So, Would I Recommend Japan? Absolutely.

Despite the challenges, Japan is one of the most accessible countries I have visited. The public toilets were excellent. Sidewalks were generally wheelchair friendly. Public transport staff were helpful and respectful. Most importantly, the places themselves were beautiful.

Final Thoughts

Japan was amazing.

It reminded me that I can still do things I love, even if they require more planning, more patience, and a lot more flexibility than they used to. Sometimes success isn't completing 100% of the itinerary. Success is simply making the trip, creating the memories, and coming home glad that you went.

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