I have been to the ALS Association annual general meeting (AGM) in Tokyo twice. First in 2018, and again in 2022.
In 2018 I could still speak, eat, and walk short distances with a cane. I was using a motorised wheelchair that could fold up to fit in the trunk of a car or taxi. My wife drove me to Okayama airport. To take a plane with a disability you are able to enter the plane before all of the other passengers. You move to the plane door and change wheelchairs; a narrow wheelchair is provided to move you through the aeroplane to your seat, while your normal wheelchair is wrapped up and put in the checked-in luggage storage.
On arrival at Haneda airport, we took trains to the closest station to the venue. You can book ahead or simply ask as you turn up. A station staff member meets you at the ticket gate and guides you through the station (sometimes using large service lifts) to the platform, and onto the area where wheelchair users’ train carriages will arrive. The staff member puts a ramp from the platform to the train entrance. It is easy to get into the train. The station staff also call your destination so a ramp and guidance are ready on arrival.
We took a taxi to the venue. The AGM was filled with people at various stages of ALS, caregivers, family members and ALS association staff. It had a lively and engaging atmosphere.
On this one-day trip, we learnt a valuable lesson. When you leave a subway station remember which exit you used. We told the taxi driver the station's name, and he took us to an entrance with no lift, only stairs. We had to search around the streets for a wheelchair-accessible entrance. We made our way through Tokyo to the airport and onwards to home. It was a long day, but very worthwhile.
In 2022 I travelled to Tokyo by shinkansen with my wife, my daughter, and three helpers. We booked the use of a small room on the train. There was enough space for my wheelchair and one helper.
On arrival at Tokyo station, we were led out through the old back rooms that the general public never gets to see. To avoid the crowds and covid 19, we chose to move around Tokyo by kaigo taxi.
We went to the AGM. Most of the participants were on zoom. It was very different from the same meeting four years before. We attended the meeting and then went to our hotel. I stayed three nights in a universal access room at the Keio Plaza hotel in Shinjuku. On the following days, we visited Misao Hashimoto and Hiroki Okabe. It was inspiring and educational to meet them, their families, and their caregivers.
Travelling with a disability presents a challenge, but there are ways to go and stay. ALS should not stop you from going anywhere you want.
