Airline personnel inspect writer Carole Zoom's ventilator and wheelchair at the airport in Sanya, China. (Jered Molinsky)

The day was cold and rainy and, as it turned out, a Chinese national holiday. Which explained why the Great Wall was mobbed with Chinese tourists dressed in pastel-colored plastic raincoats and toting jewel-toned umbrellas. From a distance, I thought, the Wall looked as if it was crawling with jelly beans.

It was quite a sight. But not, it turned out, one that could challenge the sight of me in Chinese eyes. As they pushed past me and my entourage — one friend carrying an umbrella over me, my electric scooter and my ventilator, and the other documenting every move with his camera — the tourists stopped to stare at me and my paraphernalia.

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.

Details, China

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.

I found Beijing, a city of 21 million people, to be a shock to the senses. The city is a must-see for all its cultural landmarks and sights, but I came to feel that it was a concrete jungle with overwhelmingly large intersections filled with thousands of speeding cars and motor scooters that rarely heed traffic signals.

Where we stayed, in the central part of town near the railway station, we saw few gardens or parks that would have given respite from the urban crush. On the upside, major streets all have wheelchair curb cuts, making it relatively easy to head down the street.

On the downside, traversing larger intersections (which are everywhere) is nearly impossible for wheelchair users. Major crosswalks are all elevated or subterranean, with a set of stairs leading pedestrians either upstairs to a walkway over the street or down to a tunnel under the street. Only once did we see a designated accessible path, a very steep subterranean ramp that connects Tiananmen Square and the Forbidden City (which are several traffic lanes apart from each other across busy traffic).

In 1988, when I’d first visited the Great Wall, it hadn’t been accessible. Our group had all worked together to lift and carry every last one of us up to the Wall. On this trip, I heard that the Chinese authorities had recently added a wheelchair lift at the Badaling portion, and I wanted to try it out.

That’s how we’d ended up at the Wall. We hadn’t been able to find a wheelchair taxi in Beijing, though they’re reported to exist, so our concierge had arranged a taxi van large enough for the three of us — my partner, Patrick Carpenter; my friend Jered Molinsky; and me — and my motorized scooter. Team Zoom lifted me onto a bench seat in the van, placed the vent at my feet and put the scooter in the trunk.

By the time we arrived at the Wall, it was late afternoon, 38 degrees and raining hard. Our taxi driver braved the rain to walk us up to the ticket office and then steered us across the road to the access ramp. We didn’t have to use an electric lift; we just rolled up the access ramp to the lower portion of the Wall.

The age of the Wall, the style of construction and the graffiti carved into the bricks were fascinating, and the sweeping views of the mountainous countryside were absolutely fantastic.

But I’m very sensitive to cold, so when I could no longer feel my face, feet or fingers, we made a mad dash for the van. Because of the holiday, it took nearly three more hours to get back to the hotel from the Great Wall. We were exhausted, wet and cold, yet warmed by the feeling of great accomplishment.

Follow-up and flights

Most travelers prepare for their trips by going online, making some reservations, gathering their documents and going. For a person with disabilities, travel planning requires much more than that, especially repeated contact with the hotel or airline after you’ve made your initial reservation.

When you’re reserving a hotel, there are many follow-up questions, including the most fundamental: Does your hotel have wheelchair-adapted rooms and bathrooms? Nothing ruins a stay faster than not being able to get your wheelchair into the room or next to the toilet.

I tend to stay at American chain hotels, where I have a reasonable expectation of a wheelchair-adapted room and bathroom. But I was surprised that in the wheelchair-adapted room at the extravagantly beautiful Hyatt Regency Hangzhou, the glass shower stall was built so close to the toilet that no wheelchair user could get a wheelchair within a foot of the toilet itself. The hotel concierge problem-solved with me: There were no rooms with a different layout, but he informed the cafe staff that I would be allowed to use the accessible restroom at the cafe, which was more generous in size and more appropriately laid out.

When we booked what was billed as an accessible Chinese hotel called Hotel Soul Suzhou on, it turned out to be hip and stylish but not accessible. There was a step up from the sidewalk, with no curb cut, and a two-inch threshold into the bathroom. On the bright side, a folded-up towel placed on the floor added the height I needed to get into the bathroom, and long conversations with the manager implied that improvements in access would be coming.

Arranging air travel, meanwhile, requires an endless number of contacts by phone, fax and e-mail. Airlines are interested in what kind of wheelchair you use and whether the batteries are spillable, whether you can walk to your seat and, if you use a ventilator, whether you require oxygen in flight. I’m familiar with this dance, as I was part of the national advocacy effort that led to passage of the Air Carrier Access Act in the 1980s and have flown hundreds of times in the years since I started using a ventilator. But the airline dance in China has different steps, and some of them seem to change with the moment.

When we arrived at the airport to fly from Hangzhou to Sanya, it became apparent that I was the first ventilator user the airline workers had ever seen. I’d chosen to fly China Southern airline because its Web site stated that ventilator users who don’t use oxygen aboard the aircraft (I don’t use oxygen with my vent) don’t require medical forms. But our presence at the ticket counter brought out at least a dozen staff members — ticket agents, supervisors, ramp personnel and security — to inspect my paperwork, my scooter, my ventilator, my batteries.

We handed over my medical documentation and documentation on the factory-sealed batteries, and finally the supervisor had me moved to a manual wheelchair and escorted us to the gate. We’d arrived at the airport more than three hours early and boarded our flight with less than 10 minutes until takeoff.

For our next flight, from Sanya to Shanghai, we took the added step of having all our documentation translated into Chinese. Again, we arrived at the airport more than three hours early. Once we gave the officials our paperwork, more and more staff members came out of the woodwork to inspect the wheelchair, the ventilator, the paperwork and me, and this parade of personnel didn’t stop for two hours.

I pointed out that the China Southern Web site stated that I didn’t need medical paperwork, but it didn’t help. All the negotiations took place in Chinese, and even with the paperwork translated, we were unsuccessful in getting onto the plane.

Now I was worried: We were going to miss our connecting flight to Japan if we didn’t get to Shanghai soon. I zoomed over to the China Eastern airlines ticket counter, which had the next flight that day. The China Eastern manager was young and clearly puzzled by me and my constellation of equipment. Despite our pleas, he refused to waive the three-day mandatory waiting period to approve medical paperwork (which shouldn’t have been required). Just as I left the counter with the final decision that I wouldn’t be allowed on the flight, Patrick appeared with tickets for a flight that left in 30 minutes.

The China Southern staff member who’d been working with us had become sympathetic to our plight. While I was unsuccessfully negotiating with China Eastern, Patrick had charmed that agent into trading our tickets for the next flight out, which was the flight I’d been denied at China Eastern!

We asked the manager again whether he’d allow us to fly, and he grudgingly said that if we could get the ventilator and the batteries through security, he would. When we approached security, the agents just waved us through because we’d already passed through an hour before trying to board our first flight. I heaved the biggest sigh of relief when the plane doors closed and the plane lifted off toward Shanghai.

This story illustrates the confusing territory that people with disabilities have to negotiate when traveling in China. Even if the airlines pledge to comply with international non-discrimination policy toward people with disabilities, in practice the situation is more complex as the personalities, hesitations and job aspirations of each player come into play, and the Chinese bureaucracy seems to take over.

Take the train

Before the trip, I hadn’t been able to find any information on the accessibility of the Chinese rail system. When we decided to travel by high-speed train, our hotel concierge helped us book tickets, but we didn’t know whether the train would be accessible or whether I’d have to be lifted into the train car. We were happily surprised that the high-speed trains we took — one between Beijing and Shanghai, and one between Suzhou and Hangzhou — were barrier-free.

In Beijing, station staff escorted us to a “special care” waiting room, where more staff watched out for our needs, pointed out the accessible bathroom and the hot water dispenser for tea, and escorted us to our train at the appropriate time. In Suzhou, we queued up with everyone else, forgoing the special treatment.

Neither station had steps at the entrance, and we took an elevator to the platform each time with assistance from a guard. When the train door opened onto the platform, a tiny ramp bridging the platform-to-train gap flipped down, and there were no steps or changes in height required to board the train.

Onboard, it apparently wasn’t possible to remove a seat for a passenger in a wheelchair, so in Beijing, the “special care” representatives found me a spot in the cafe car, where I sat comfortably for the six-hour ride. On the Suzhou train, not having requested help, we didn’t know which car was the cafe car. So I just positioned myself in the widest part of the hallway near the exit and the bathroom. (Though I didn’t need to use the restroom on either train, they didn’t look big enough to accommodate a wheelchair user.)

The trains became more and more crowded as they approached their destinations; there were a number of people sitting and standing in the hallway toward the end of the trip. I shifted myself as we approached each station to stay away from the door where folks were hurriedly entering and exiting. (Since my legs have been broken three times, I’m especially sensitive to getting hurt by people who don’t see me and trip over me.)

All in all, the accessibility of the high-speed train was better than my last three Amtrak experiences in the States. It’s the ideal way to travel in China. With minimal paperwork and minimal bureaucratic hassle, the train gives you a view of the real China — both countryside and passengers.

The bottom line

After visiting Beijing, Shanghai, Suzhou, Hangzhou and Sanya, I learned that I can go to places that are less than accessible and find a way to do more than just get around. I can dig in and explore. Accessibility issues vary in different places, and it’s up to me whether they’re going to be minor annoyances or trip stoppers.

The lessons I’ve learned through my trip to China have opened up the world to me. I’m already eagerly planning my next visit. There’s a lot more of China that I want to see.

Zoom is an artist and activist who lives in Hawaii and blogs about traveling and disability at