Something about Timor-Leste has pushed me to a new point in my journey. I’ve suddenly come to a place where I have accepted the inequality in this world. It breaks my heart that our world is so full of it, and I can’t support it nor will I ever, but I’m accepting it.
On my flight into Timor-Leste, across the aisle in the unfilled plane, a man and I started chatting. He was from Timor-Leste and when I told him where I was from, he responded, “We don’t all have a choice,” in a non-hateful, non-judgmental way. He was simply being factual. He continued to smile and tell me about his country, but it was there again, staring right at me, the total privilege I carried with me each and every day of my life. I sat through the rest of the flight that was filled with strong body odors, smells, and sounds of Timor-Leste knowing that this would be a place like none I’ve experienced before.
I was driving through Dili, Timor-Leste with a driver the hotel provided. He spoke about five words of English, and as I stared out the window, taking in the sights of extreme poverty, I wondered how many windows I would need to stare out, how many eyes I would peer into, how many smiles I would cross before I came to understand how this world could be so unfair. Something about the hours of staring out that window made me realize that I will never understand it. It’s bigger than me. I have a strange acceptance now, a peace, if you will, with the fact that the world has always been and will always be unfair.
Timor-Leste itself, aside from the poverty within the main city, Dili, is a beautiful place. The people are gracious, kind, full of smiles and good intentions. They are one of the newest countries in the world, declaring independence only 20 years ago in 2002. And because they are a small island country, sitting close to Bali, they are surrounded by beautiful coastlines. It is one of the places in the world where the coral is still relatively healthy and isn’t dying or bleaching. Of course turning around a brand new economy in a brand new country takes an immensely strong group of leaders…and time. There’s no telling what will happen with Timor-Leste, but they declared independence for a reason. I once read that all a country is is a group of people with certain religious or cultural beliefs who have made a decision to reside in a specific part of the world, and we – all of humanity – have decided to draw invisible lines around each of those groups, protecting the uniqueness about them. So, for the people in Timor-Leste, I believe that they must feel so strongly about their culture that they are willing to endure the deep transition they are going through, despite the war, poverty, and crime that comes with declaring independence, and ultimately protecting their culture, beliefs, and their homeland.
I want to write more about Timor-Leste but it’s difficult for me to articulate everything I need to say. The most profound moments for me were found just watching the people. I saw children, toddlers really, riding on motorbikes moving at 60 mph without helmets on. I saw dirt roads where trucks would carry a dozen young men on the back, likely bringing them to construct some sort of hard work in the already overheated country. I saw mothers selling fruit on roadside stands, their children playing by their sides, trying to stay cool under a multi colored umbrella.
I needed to have my Guinness statement signed, and when I asked the hotel workers, they advised that they would need to check with the boss. I spoke with him on the phone and explained what I was needing, and he gave them permission to sign their names. When I offered to pay my driver for his services – which was several hours of touring – he declined and said, “You will need to check with the boss.” I suppose there is some sort of a caste system here as well, always letting ‘the boss’ make the final decision. Ironically, I never saw ‘the boss’ on any of the hotel grounds where I was staying.
On the day I left, the same driver drove me to the airport. As he turned into a crowded parking lot, I thought, Surely this can’t be it, as I looked over at the very crowded and rundown building. There were a few hundred people lining the outskirts of the entrance, and when he stopped and got my wheelchair out, I silently hoped he would escort me inside.
He did not, though. He simply pointed and I said, “This is it?” He nodded, pointed again, and I crossed the street, quickly zipping up and securing my bag. I crossed the street to the crowded building looking for some sort of reassurance that this was actually the airport. I pushed my way through the crowd, the only Westerner, not to mention person with a wheelchair, until I saw the ‘Arrivals’ sign. Oh, thank god, this is actually the airport. I made my way inside where a very questionable security check was done and I found myself in a small waiting room. It turns out, the crowd of people outside were all waiting on an incoming flight so they could meet their loved ones.
I knew that the next few hours would be quite grueling. I was doing an overnight flight pattern to get to Vanuatu. After the first two flights, I landed only to discover that there was water on the runway in Vanuatu and my flight had to be rescheduled, and it was no longer one flight, but two. There was nothing I could do about this. After all, I had no interest in hydroplaning on a runway in a commercial aircraft, so I waited the few extra hours for my arrival into Vanuatu. When I landed, I had a message that my hotel in Tonga in a few days had been cancelled (and there are not many hotels in Tonga). I just thought to myself, Yep, that makes sense given the logistical nightmare this leg of my journey has been. I would deal with that in a few hours when I got to the hotel.
I was exhausted, grumpy, and pretty gross by the time we landed. I found a taxi easily and he drove me to the ten minutes to my hotel. His name was George and he was such a happy man. It was evident that he took an immense amount of pride in his country. And he had every reason to! It was immaculately clean, the people are wonderful, the views are spectacular, there is no poverty. This was a complete 180 from what I had experienced just 12 hours earlier in Timor-Leste. And I needed it. I desperately needed a few days to rest and process the last ten days of my trip. That’s exactly what I did in Vanuatu, a place perfect for just that.
On the evening before I left, I wandered down to the hotel lobby, two blank Guinness Witness Statements in hand. I asked at the front desk if I could get two people to sign them. A young man lit up, his smile bigger than anything I’ve ever seen. It has been a very special treasure to ask people for their help in getting this award, something I’m very uncomfortable doing. The joy people get from knowing they could be a part of this journey is absolutely one of the most fun things I am getting to do.
As I was waiting on the forms to be completed, a few women from the hotel bar started chatting with me. They had overheard my request and had a lot of questions. We talked about the process and what it meant, and they both said, several times, “You are very lucky.” I will never forget the sounds of their voices, honest, genuine, and real. Yes, I am very, VERY lucky.
Another man sitting in the lobby asked me about the award also. He asked where I was from and how I got my wheelchair. He went on to explain that his brother had to have his leg amputated a year ago and they’ve yet been able to find him a prosthetic, but have been trying very hard to get one from Australia, just an hour flight away. He was subtly pleaing for my help, although there was nothing I could really offer him.
With stories like his, and all of the things I’ve seen around the world, I’ve lately been feeling a lot of imposter syndrome about my disability. I know that I have a disability – I cannot walk! But I don’t actually know what my medical diagnosis is. And then how do we define disability? I am very able bodied, or at least compared to some others who use wheelchairs. And I’ve done more with my life than much of the world, partly because of my strong will and partly because of where I was born. I’ve only ever been given a medical diagnosis based on my physical attributes – diastrophic dwarfism – if that means anything to anyone. I’ve also always said that it doesn’t really matter – the disability is there with or without a title – but lately I’ve been wondering if having a medical term could provide something that I am perhaps missing within my own self-identity. Perhaps I will feel more confident in my responses when people ask “What happened to you?” if I can spout off some sort of fancy medical term that really means nothing to anyone except someone with a fancy medical degree.
I am hoping to have my entire genome sequenced in the next few months, something that also pains me knowing that only the privileged in this world are so fortunate to be able to spit in a tube and have a report emailed to them with everything scientific they could ever need to know about themselves.
It’s a weird, difficult, rewarding, and unsettling feeling to be the only one like yourself. I don’t know anyone else who has a medical situation quite like mine, other than my younger sister, and her challenges aren’t exactly the same. It’s even more strange to really come to terms with who that person is and what makes them that person. I suppose that we each have our own attributes that make us unique – that’s what’s so absolutely rewarding about this world. But I truly do not think there is anyone exactly like me, with whatever diagnosis I have. I’ve lived my entire life ‘being the only one’ and I wonder if that has somehow propelled me into this journey itself. I wonder how ‘being the only one’ has pushed me to do something that no one else has. My entire life, I’ve been comfortable ‘being the only one,’ so of course I would think it’s natural to ‘be the only one’ traveling the world alone with her wheelchair.
I’ve begun to think it’s not a big deal. I’m just doing it and living it. And there are people all over the world who just smile and help me when I need it, not batting an eye. It must be pretty normal, right? And just like that, imposter syndrome has stepped in yet again. I wish that every person could challenge themselves to this point, to get to a place where it’s really hard, finish the task at hand, and then realize that all they had to do was to ‘live it.’ And when and if we can all get to that point, imagine, just imagine, the potential this world would have, if everyone with big dreams was able to live them.
But then, as I was reminded by the man on my flight to Timor-Leste, and the brother searching for a prosthetic in Vanuatu, maybe that’s impossible, because…“We don’t all have a choice.” Many people are still fighting for independence and basic medical care. Yes, I am very lucky. I am learning to accept that.
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