I felt as if I’d become the eighth wonder of the world as they ogled and pointed, and I told myself that it was my ravishing beauty that enthralled them. But of course I knew it wasn’t that.
I’ve used a wheelchair since age 13 because of congenital muscular dystrophy. Nevertheless, I’ve always been a traveler. Twelve years ago, I started using a ventilator full time. Though I’ve traveled internationally since then, traveling is now vastly more complicated, so I’ve stuck mostly to places that are considered fairly accessible, such as Spain, Holland and Argentina. But my true travel tastes tend to the more exotic and challenging, so earlier this year, when I booked a spring cruise ending in China, I decided to extend my trip and see what it would be like to travel as a person with severe disabilities in that Asian country.
Most of my friends cautioned me against an extended trip to China: There’s little information available on the Internet about travel by wheelchair, and because I don’t speak Chinese, many issues that might crop up would be far more difficult to resolve.
But I’d been to China once before, in 1988, as part of a Mobility International USA delegation to meet with leaders in the growing disability rights movement. Twenty-five years later, I would discover that although China has undergone enormous changes in accessibility, it still has a long way to go to be truly accessible to everyone. But it’s still more than worth the hassle.
The shock of Beijing
In addition to the concerns about accessibility, it’s important to understand that disability is considered shameful in Chinese culture. And staring is not considered rude. At national monuments such as the Wall or at the Guanyin Statue in Sanya (the fourth-largest statue in the world), Chinese tourists would invariably turn around 180 degrees to stare, point and wave at me.
Before I’d left for China, I’d visited a local Chinese restaurant in my town and asked the waiter the most important phrase for me to learn. He didn’t offer “hello” or “my name is” or “how are you?” He was clear that the phrase for “excuse me, sorry” was what I needed to learn to say.
He was right. The phrase came in handy with crowds of people pressing en masse through streets, museums and buses. Sometimes, when I was completely surrounded by people staring at me, my tubing and my wheelchair, it was only this phrase that would part the crowd around me.