About ten years ago I spent one month in New Delhi, India . I was visiting the Red Mosque in the old town and I happened to meet a guy with whom, for some unknown reasons, I started to talk about disability. I told him that I really felt sorry for a friend of mine (we used to love talk about traveling) who would probably never have had the opportunity to visit such places. That’s where I was wrong. This friend was Federico , who about a year ago sprung a complete surprise on me and asked me to join him on his trip to Vietnam.
Federico visiting the War Remnants museum in Ho Chi Minh City
Federico Villa is twenty –nine years old and he is disabled : he suffers from a neuro-degenerative disease, Ataxia of Friedreich, which has constrained him to the use of a wheelchair since he was twenty. A paralympic hand bike athlete, in 2013 he decided to cross Cuba from North to South in his wheelchair on his own: the goal was to promote and spread a different concept of disability beyond all common stereotypes and to showcase all those devices and technological resources that grant autonomy to disabled people.
It takes us a whole day to arrive in Vietnam: 18 hours, including one stop-over in Dubai, from Milan to Ho Chi Minh City, with a hotel just for the first two nights.
9/11 arrival in HCMC
10/11 tour in HCMC
11/11 HCMC, campus RMIT campus
12/11 HCMC, Enable code+Drd
13/11 from HCMC to Can Tho — meeting with Nhung
14/11 Can Tho, floating market
15/11 HCMC, war museum— night: train from HCMC to Nha Trang
16/11 Nha Trang— night: train from NT to Hoi An (Da Nang)
17/11 bus from Da Nang to Hoi An — visit at Reaching Out
18/11 tour in Hoi An
19/11 Hoi An —night at An Bang, from Binh
20/11 bus to Da Nang — train to Hue
21/11 Hue, forbidden city—train to Vinh
22/11 Vinh — night: train to Hanoi
23/11 Hanoi — campus RMIT+DP Hanoi
24/11 Hanoi— interwiev Thi Van
No itinerary, no plans (by choice or rather out of necessity), just a ticket for a return flight from Hanoi three weeks later. We have no idea about our means of transport, maybe the train, but who knows if it will be really possible.
Why Vietnam ? It’s Federico's decision: if somebody asks, his answer would always be “you would ask me the same question for any other destination”
In fact Vietnam is one of the countries with the highest rate of disabled people in the world and it affords us a unique opportunity of exploring this country from a different perspective, as Federico likes to point out “from my sitting position”.
8 million people and just as many scooters. From the very first moment we realize that the most complicated thing will be coming to terms with how to cross the street. The town is modern and chaotic, the temperature is awful. We leave the hotel and head for the Ben Thanh market, then after four, five kilometers the Botanical gardens and still walking, back to the starting point . It’s the first time Federico and I have travelled together, at least on such a long journey . I had previously been with him to Beirut during one of his hand bike marathons: I was studying journalism at the time and I was becoming fond of the Arabic world. We spent almost one week there visiting Baalbek (an archeological site and fortress, close to the Syrian border ) and walking all over Beirut. We had had a good time and seen a lot of this town, even if we were really exhausted just after a few hours. Beirut is a continuous challenge of up-and-down slopes; pavements, when there are any, are riddled with holes.
Six years ago Federico could still use his wheelchair fairly easily but he didn’t have the electric wheel, which – I understood this on the very first day in Vietnam – enables him to be totally independent: we walk side by side, more often than not a few meters apart from each other, he goes up and down the pavements by himself or with minimal help. He is quick, he manages to cross roads better than I do, when we want to stop or enter a coffee shop, he needs a few minutes to remove the wheel. People are curious, they point at him, they smile and they don’t disguise their surprise. For us it’s an opportunity to stop and talk with the locals, their questions are very frank and direct : Why can’t you walk ? What about your legs, can’t you feel them? Did you have an accident? Have you got other sick relatives? How does this electric wheel work? How much does it cost ? Federico always answers their questions readily, but he tells me that he likes to give different versions (it will be like this in Hong Kong too).
One evening, while walking in a park, we were approached by a boy. It’s common because students often go for a stroll in the park in the hope of meeting foreigners and practicing their English.
Hanoi, a person passing by asks Federico about his electric wheel.
“What happened?” he asks, and Federico “I was born like this”. “I’m sorry” he says, and Federico “Don’t be, in a certain sense I’m lucky, I can travel and do what I like”. The boy seems to smile, but looks puzzled and walks off, not convinced at all. Traveling with other people involves coming to terms with their different needs and rhythms. In the morning Federico needs time: getting out of bed, brushing his teeth, packing, getting dressed, putting on his shoes, drinking coffee, all these common daily actions require much more time and efforts than the average, due to his lack of coordination and balance. Before setting out for our journey, sometimes seriously, sometimes joking he kept on asking me if I really meant to travel with a disabled person. And I, for my part, kept on thanking him for making me aware of something, I hadn’t really realized until that moment. On the other side Federico is a perfect travel companion: he knows when it’s time to accept a compromise, when it’s time to drink a beer without talking. Only one requirement is strictly important, when it comes to booking a hotel : the bathroom door has to be wide enough and there mustn’t be two flights of stairs between the reception and the room! What else ? Improvisation and try, try and try again.
After four days in Ho Chi Minh we decide to visit the Mekong delta. We reach a bus station by taxi and then a mini-bus takes us to the main station in the suburbs. We load the wheelchair and the electric wheel in the trunk, while the driver carries Federico onto the bus on his shoulders. We laugh because they seem to treat him like a piece of luggage: where there is no accessibility, they endeavour to find a solution with a total lack of pity and with no messing around. When we arrive in Can Tho, the largest town of the delta, it’s about three in the afternoon: five hours for 150 km. At the bus station the sun is terribly hot: as soon as we get off, we feel like aliens, since nearly all of the bus drivers gather around Federico’s wheel, stare at us and make comments. We chose an hotel defined “accessible” on the website, and we head over there. Though, there is no elevator and the rooms aren’t on the ground floor. Fortunately the owner runs another place, not far away, and here there is an elevator.
Can Tho, floating market on Mekong river
Before meeting the vice-president of a local association for disabled people, we have some free time and we decide to go and book a boat trip to the floating markets. In the evening, while waiting for Federico, who is having a shower, I pop out for a short walk and I tell him that I’m happy not to be in the chaos of Ho Chi Minh City. He raises his eyebrows and says “for me it’s not the same, I wish I could go away right now”. While having the shower (the bathroom was far from clean and neat), Federico had slipped and fallen on a drainpipe jutting out of the floor with the result of a 20 cm long wound on his thigh. When he had fallen, the hot water was still running: since he has problems of coordination and balance, it took him a few minutes to turn it off and at that point besides having hurt himself he had also scolded himself . When he tells me about this, I simply remind him that in this situation it’s absolutely pointless to be so stubborn about brushing his teeth with mineral water.
From Can Tho we go back to Ho Chi Minh and then leave again, heading North, along the coast, by train. Much to our surprise, it’s very complicated to buy a ticket and after numerous attempts to purchase one on the official railway website, we realize that the best solution is to go to local agencies and buy from there, even if the commission amounts to three dollars for each ticket (this amount is higher that the price of the ticket itself for some routes ) We book two routes: Ho Chi Minh city – Nha Trang and Nha Trang – Da Nang ( respectively 6 and 7 hours ). The problem now is the toilette: it’s a very serious problem because if Federico’s bladder gets too full, it means he can’t manage to urinate and this leads to emergency room and a catheter . The journey to Nha Trang is easier than expected. The only surprise is at the arrival: whilst at our departure the train was level with the platform, at our destination there is a meter difference in level. With the help of other people we overcome this difficulty too. Nha Trang is a sea resort full of Russian tourists. We arrive at 5.30 am, when the town is awakening, and after a 30 minute walk we reach the already crowded esplanade.
Da Nang, waiting for the train to Hue.
In the evening we are back at the station and catch the train to Da Nang . Things start to go wrong beginning with the train assistant trying to ram Federico’s wheelchair along the passageway: he doesn’t seem to understand that the wheelchair won’t fit between the seats and insists in pushing it, trampling on my foot and crushing Federico’s hands against the seats. A couple of hours before arrival, Federico looks worried: he has to go to the bathroom and of course it is not possible on the train. He wants me to stay on the train, he says “ I ‘ll get off and I’ll join you tonight at Hoi An”. I try to explain him that I don’t mind about losing one day, I knew it might happen. But he doesn’t want to listen, he assures me that it is not purely a matter of pride. At this point, I only ask him to let me know by the evening where we will be meeting . In the meantime one hour has gone by and Federico is still on the train: we arrive at Da Nang together, we get off and after solving the problem of the bathroom, we head to Hoi An.
You can reach Hoi An from Da Nang by taxi or bus: we choose the bus. As usual here, it’s normal to charge foreigners and tourists more, but this time they charge us about twice as much for the bus ticket. We keep on bargaining over the price almost as far as Hoi An, hoping to reach an agreement . The situation turns out badly: at the station everybody gets off, I unload the backpacks but they make me understand that the wheelchair won’t be unloaded until we pay and moreover they refuse to help Federico get off. In the meantime two other colleagues join the driver and Federico looks at me from his seat on the bus and makes a very understandable gesture for me to just pay whatever they want to charge us and be done with it. While walking to the centre, Federico tells me about Cuba, where he had gone there on his own a couple of years earlier.
Hoi An is a quiet touristic town where everything seems to be going smooth. But technical problems are likely to happen, considering the devices Federico has to use: it happens one night, going back to the hotel.
Hoi an, Tauny and Gio’s son is playing with Federico’s electric wheel
The electric wheel is fixed to the wheelchair with two metal bars by two ring knobs. For some reason one of them spins blind and consequently it’s impossible to detach the wheel from the wheelchair. This makes it very difficult for Federico to get in and out of it. We postpone the problem until the day after. By chance we enter a courtyard and we meet Tauny and his wife Gio. They have been handcrafting the famous Chinese lanterns, which are almost everywhere also in Hoi An, for three generations. We spend a couple of hours talking with them, Federico explains the problem he had with the wheel and Gio with a single hammer stroke removes the bar that was stuck, and succeeds in detaching the wheel. One of the ring knobs is damaged, but the other one should work. We stop in Hoi An one day more: Le Nguyen Binh, the founder of one association we have interviewed, has invited us to his home as his guests. Binh lives with his wife and his children at the seaside not far from Hoi An. He himself is in the wheelchair and he loves swimming. He swims every morning and he had a plastic chair built just for him, by which he can go on the beach behind his house and reach the water. He invites Federico to try it and we all go to the beach: this is one of the moments when I see Federico really happy.
It is not true that a disabled person can do everything and go everywhere . Many people had discouraged us from visiting Hue, the ancient capital of Vietnam, where there is the Forbidden City, a large set of buildings measuring more than one square kilometer, in which the Emperor and his family had lived until 1945. They told us that a person in a wheelchair would not have the possibility to see anything, but we are curious and we decide to include it in our itinerary . We try to understand the map of this place with the help of a guidebook, but with no success; so we go to the entrance, where Federico is not charged for the admission ticket, we leave the electric wheel in one of the souvenir shops and we decide to dare: giving it up is anyway always possible. There are some stairs, about 30 cm. high, and the path is rather rough and bumpy, but Federico is not very heavy and his wheelchair too. Sometimes people help us but it is not always necessary: we regret not having had one day more and we wonder what was so inaccessible.
Dog meat on sale at the market and the time doesn’t go by. Vinh is the only non-tourist city in our itinerary and we happen to be here just by chance because we need to interrupt the journey from Hue to Hanoi. We arrive late at night and we leave again exactly one day later. It is a rebellious city: three times destroyed, first by the French, then by the Vietminh and at the end by the American. We read in the guidebook that it was rebuilt thanks to the money of East Germany and that’s why the architecture reflects the Soviet style. There is only one museum, the Soviet Museum, which is closed. Apart from walking and talking, there isn’t too much to do. I met Federico at school: at that time I was almost disappointed as I noticed that he was treated differently in comparison with other students: he could be late at school, sometimes he could leave the classroom and spend hours and hours at the “bar” with his support teacher, who sometimes dared also to suggest him answers in Latin translations. He has only motorial problems, he doesn’t have any learning difficulties and I had the sensation that all these favoritisms made him more different than what he was effectively.
It happens that, due to excessive zeal, people become over protective and they worry (possibly too much) that Federico may need help. They interfere without realizing that they are almost intrusive. It isn’t easy to communicate in English and explain that Federico is able to manage on his own while in the bathroom. We decide to take a day tour to Ha Long Bay from Hanoi. It is the only possible solution considering we have very little time. A small bus meets us at the hotel and we reach the bay in about three hours. From the beginning the tour guide, who is fairly nice and about thirty years old, shows some anxiety for the presence of a disabled person. He keeps reassuring me that he will help as much as possible but he wants us to know that Federico will not be able to do certain things: the canoe tour and the visit to the cave. Once on the boat, they serve lunch. Federico needs to go the bathroom but the wheelchair does not go through the door. We remove the wheels and mount them back inside the bathroom, so with the help of the guide he manages to enter. I try to eat, but the guide keeps asking me if I am sure I don’t want to check if my friend needs help. I explain that there is no need to worry because Federico has been using bathrooms on his own for thirty years and he will surely call when he needs help. We are only ten meters away. When Federico gets out I tell him about the guide’s concerns and the fact that I am a little bit annoyed. He looks at me and says “welcome to my daily life”. From that moment on he keeps on asking the guide for things that need little effort even though he can make it on his own; like picking up the jacket, getting the phone and pushing him along the corridor. I make Federico notice that this asking for help is really excessive He answers: “Too bad for him, I have to survive and if he is happy to work instead of me, good for him. Don’t you remember? I am a canny guy”
Ha Long Bay, on the boat, visiting the bay
It is a strange day. We spend it together but separate. Federico never gets off the boat and because of the guide’s apprehension he gives up visiting the caves with the small rowboat. I go and I show him the pictures. I am still convinced that if we had more time he could have done it too. Actually I am the one who insisted to stop here only one day. It was mainly a matter of time: almost three weeks have gone by and we still have to meet several people in Hanoi. I also knew that here the logistic difficulties would have been more complicated. While returning to Hanoi I ask Federico if he is bored but I only receive half an answer. We will talk about it some time later when we meet in Milan. “I am happy because it was a big achievement to arrive there. I know I could have insisted to go on the rowboat, but I am happy that you did it, even though alone. I appreciate that you asked me but did not insist to stay with me. I would have felt like a burden. Besides, you know that I cannot swim, I am like a stone that sinks in the water. I had just read on the guide book that if someone falls in the water local people cannot rescue him because, according to their traditions, they should sacrifice one of their own.”
Hanoi is moderately expensive and melancholic. We arrive after a sleepless night on the train. Probably it is the first time that it is exhausting to find a hotel. We had booked one, described as accessible but when we go to the reception we find out that the room is on the second floor without the elevator. They look at me and at Federico and wait. It is like they expect that Federico stands up and walks up the stairs. We cancel the booking and go around to check all the hotels in the area. We finally find one after ten attempts. Federico needs to steer the wheelchair between the door and the bed but it will do it. I ask him and myself how he is able, even when he is tired, not to get annoyed owing to these sets back. He answers that there are just a few things that really upset him like getting dressed and scratching his ankles. “ I have lately used my handbike less frequently. It is because it takes me a lot of time to dress and undress. The hand bike suit is close-fitting: to put it on I have to squeeze between the wall and the wardrobe to avoid slipping and falling: it takes me forever. When I come back I have to get undressed, take a shower and dress again. One hour cycling and more than two hours to finish it up”. He is quite precise while describing the movements, the falls and the tricks to avoid them. And let’s not talk about the frustration when people think it is only laziness on his part. At this point he switches to another topic.
West Lake, Ho Tay, in Hanoi
There are times, when we meet people for the interviews, they ask me questions concerning Federico. He does not hear well (due to his sickness) and he is disabled. But I cannot speak in his place and people should make a little effort not to exclude him from the conversation. We often speak about his impaired hearing which is a recent problem for Federico. Even on this occasion Federico’s reply catches me off guard: “Indeed I withdraw and take my mind off. Dinners with many people are boring to me. When more than two people talk at the same time I only hear noise. But I cannot always insist to have words repeated or to make them understand that it is rather disrespectful not to speak directly to me when they want to ask me something. But now I accept the idea of trying to understand and solve problems. It is time that I learn how to lip-read . I have always postponed it: it took the trip to Vietnam to realize that it is time to face this problem too.” At Hanoi we went our separate ways: I return to Rome and Federico continues his trip on his own to Hong Kong, Manila and Singapore. Keep rolling.