This piece is part of the the Eucid Series, which highlights the voices of contemporary, urban women from Mongolia to draw up a genealogy of female mentorship. At the end of each interview, each woman was asked to name a role model, who was then interviewed—and theirs is the story which will be published next.
It was John Langdon Down. A British doctor. 1860s. He was looking after people with disabilities, learning disabilities. Just outside London. A house called Earlswood Court. Basically, it was a nursing home for people with disabilities. He was a doctor there, and in his opinion, he felt like there were a group of people that looked like each other, and they had slanty eyes and flat faces. And he thought they looked like Mongolians, and he started the term Mongolian Idiots. And it became a worldwide diagnosis.
So, now there are three groups of people. The first group are the travellers. They know where Mongolia is geographically. They know what Mongol means—Chinggis Khan. Mongol means for them Mongolia, Mongolian history. Then the older generation abroad. They’ve been taught that Mongol means someone with Down syndrome. And the third group, the younger generation. They don’t know the two historical meanings. They think it is a swear word, a cool word. It’s quite in fashion. It means idiot or stupid. Sometimes they refer to each other in an affectionate way: you mongol.
But they don’t know the background.
That’s why I want to explain, in my way, my story—who Mongol is. Because I don’t feel like telling them off, lecturing them. After all, we are all the same. I just happen to be the ethnicity called Mongol.
So your nationality is American. So let’s say, all your life you believed you were American. Then you are 20. You decide to live abroad. Let’s say you came to Europe or somewhere else. And then you found out American means something else. People are referring to it as an insult. That is what I felt.
I was a teenager, when I came across it the first time. I was looking after sheep and goats, and I used to take my dictionary with me. And this was, I think it was an Oxford Dictionary, and the word mongol was in there, and one of the meanings was Down syndrome. The word syndrome, you know, has negative connotations sometimes, and I was wondering what it meant, and then I didn’t really think of it again. I left it.
Then when I came to study in London, I was talking to my classmates who were French and Chinese, and they said, “Oh, we didn’t realize people from Mongolia can be normal like you.” And I didn’t understand. I said, “what are you talking about, you should meet the great ones.” You know, I thought they maybe thought I was clever or something. I said, “oh, I’m nothing, you should meet the great ones.” I mean, there are amazing amazing people out there, Mongolians. I didn’t understand. But I didn’t really think much about it. I just left it.
After my son was born in late 2009, I realized what they were referring to, because Billy was diagnosed with Down syndrome, and there was confusion about his diagnosis, because of my background being Mongolian. I read the history. I understood.
So now, to me, it’s like a double-edged sword, with the original meaning still inside. It’s like steel.
I started talking about it after Billy passed away. I came across this tweet from a well-known comedian. At first, people didn’t really want to hear about it. It’s uncomfortable, you know, this topic. But I needed to talk about it. It felt like a splinter in your finger. If you don’t take it out, you don’t heal properly. If you take it out, then you will heal. Otherwise, it will get worse. It was going to get worse for me.
People told me I should grow more resilience and ignore it. But I grew resilience against those comments. It was for my son that I talked about it. And for—I knew if it happened to me, it would happen to other people, other mothers.
And then, people did get in touch with me, actually, lots of people. People from Down syndrome communities who hear this word as an insult for their children. Mongolians abroad, who get laughed at when they use this word to introduce themselves, because people remember the other meanings. They said it’s better just being called Chinese almost. Which made me sad, because you know Mongolia is a rich country with rich culture and language. We shouldn’t be ashamed of saying our ethnicity is Mongol.
It was in the 1960s that the World Health Organization included a directive. Down syndrome was included as Down’s Disease. That was supposed to be the start of it, the end of it. 1962. The Lancet magazine. A medical journal. Eighteen scientists wrote The Lancet to say it was an embarrassing term, politically incorrect. They suggested a few different options. Down syndrome. The editor chose Down syndrome.
However, as you know, habits die hard. And it’s still… I work on a Down syndrome group on Facebook, and I remember posting about the history of the word, and then somebody comments saying, “Well you look a bit, dot dot dot.” And I remember reading that and, actually, tears.
Once in Scotland, at a presentation, I talked about Dr. Down’s paper, and somebody said to me, “Well, he’s got a point.” But that’s why it needs to be tackled.
Because we have the technology—not in Mongolia. Things like wheelchair access hardly exist in Mongolia. But in Britain or Scotland, the technology is good. The Scottish government, they have this Equality Action Plan, so training providers and everybody, really, they need to provide support for people with additional support needs, and then there are quality checks to check how they are doing with it. It’s a more forward-thinking government. It’s quite good.
But attitude-wise, still a lot of work needs to be done in Scotland and Britain. People who are touched by it—have close family members or friends and people who work in schools with students with additional support needs, children, their attitude is different, but in a broader sense, the general public, yes the attitude is still there—prejudice.
In Mongolia, the attitude—we need people to accept that natural occurrences, like genetic conditions, are nobody’s fault. People think it’s the mother’s fault. She’s taken drugs she shouldn’t have taken. Not illegal drugs, just medicines, medical drugs. People think it’s the family, the genetics, the background, you know, that kind of thing. You know, it’s just—I worry—in every society, I guess, it falls on the woman, because they are bearing the kids and giving birth to them. The woman is the source of the problem. The issue is the mother. People see that, which is not true unfortunately. People don’t see exactly. From these kinds of things, depression. Domestic violence.
It’s nobody’s fault.
When I talk—I am a counselor—when I talk to my students with additional support needs or disabilities, I say we are all different. I give an example about myself. I say: “I can’t be an air hostess, cabin crew on a plane, because I am too short. Some people can’t be a pilot, because they don’t have the eyesight. So just like that, we look at other opportunities. We can do so many other things. Why focus on what we can’t do?”
I have children write to me. I keep their letters in a box on my desk. I have children telling me all the time they will never ever use that word.
My role model is the woman who returned all these dinosaur fossils from America back to Mongolia, Bolortsetseg Minjin. She is my friend, and she inspires me hugely as well. She is a paleontologist for the American Natural History Museum in New York.
Morgan Thomas received her MFA from the University of Oregon and was the recipient of a 2016-2017 Fulbright grant to Mongolia.