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A LIFE REDEFINED

By MICHELLE BOROK

Uuganaa Ramsay went to the UK on a teaching scholarship in 2000, and more than a decade later – now a mother and author in Scotland – she continues to educate. Her newly published memoir, “Mongol” was released in e-book format on Human Rights Day, December 10, 2013, and will be available in paperback on January 16.

The book explores the junction of her life growing up in rural Mongolia, adapting as an immigrant in Britain, facing the challenge of being a mother of a child with Down’s Syndrome, and living with loss. The label of “Mongol” impacts her deeply in the memoir, as it shifts from a symbol of pride in Ramsay’s heritage to a word used to alienate, dehumanize and insult. The loss of her son Billy inspired her to share his story, tightly woven into her own.

As Mongolia responds to continued worldwide efforts to improve awareness for the rights and dignity of the differently-abled, Ramsay is on a parallel crusade to educate people about what it truly means to be “Mongol” and what that label is and is not. In an interview with the author, we learn more about her journey and her newfound life’s work.

-Congratulations on the launch of “Mongol”. It’s a book that will probably cover new territory for many readers. How did it come to be?

-Thank you. When our baby Billy was born in Scotland in 2009, I had been living there about ten years. By that point I had studied in a postgraduate course at the University of the West of Scotland and had been working as a Careers Adviser and Personal Development Adviser in Scottish schools and colleges.

Billy was diagnosed with Down’s syndrome shortly after his birth but my Mongol ethnicity caused some confusion in his diagnosis because of the historical term “mongol” describing people with Down’s.

Billy passed away when he was three months old. After he died, I promised him that I would make him live on in people’s minds. I started writing a blog and then realized that a book in memory of him would be more tangible. A copy of every published book in Britain is kept in the British Library and that’s what I wanted. Another reason was I noticed that there were many books in English about Mongolia written by people from different countries and cultures. I wanted to tell my story as a Mongolian through Mongolian eyes. The Mongolian lifestyle, family and cultural values, and the true picture had not been written about by a Mongolian.

Additionally, there are many confusing meanings of the word “mongol” outside Mongolia. I wanted to show who today’s Mongol is through a human story. I would like the word Mongol to sound like other ethnicities, not be used as an insult or as the historical name for Down’s syndrome.

-At what point did you know that you wanted to carve out a life outside of Mongolia?

-In December 2000 I moved to London to live with my Scottish boyfriend who became my husband a couple of years later. We had met earlier, while I was doing my teacher training course in London. He used to work at that school then and we were introduced by my tutor.  I think it was a tough but brave decision to leave Mongolia and start a new life somewhere completely different from my rural Mongolian background. In addition, Mongolian girls going out with foreigners was frowned upon then, so it was a controversial decision which I didn’t tell many people about at the time. When I look back now, we were crazy. I turned up at Heathrow airport hoping that he would meet me. It was tough settling in Britain at first and things got easier after we moved to Scotland a year later.

-Your book takes on some sensitive issues in Mongolian culture and Western culture. Did the politics of “Mongol” drive your writing or did it arise from the process of storytelling?

-Both. Through writing my story while grieving after our son, I figured out and filtered many things including the misuse of the term “mongol” and human rights issues such as disability acceptance.  The politics of “Mongol” are complicated on different levels and I believe through a human story people can understand and see this word from a different angle. Of course, Mongolians refer to themselves as Mongols in Mongolia and are very proud of the culture and history. It’s a different matter outside Mongolia. I observed that there are three meanings of the word “Mongol” outside Mongolia.

People who have traveled or are educated know the 13th Century Mongol history and that’s what they think of when they hear the word. Some of them might think that “Mongol” is a word which only refers to the Chinggis Khaan era without the knowledge that even today the word “Mongol” is widely used describing the country, ethnicity and culture.

There are people who were told to use the term “mongol” instead of “someone with Down’s syndrome”. The term comes from the 1860s, when British scientist John Langdon Down observed people with Down’s, and in his opinion, they looked like the Mongoloid race. In that era, descriptions like Negroid, Caucasian and Mongoloid were normal. A hundred years later, in the 1960s, the World Health Organization officially dropped the term for use in medical and scientific papers. However, this old habit is still out there in many countries. For instance, in Lebanon they have been campaigning to stop using the word “Mongol” to describe people with Down’s syndrome.

The third meaning is as an insult word and an aspect of hate speech. Some people use this derogatory term amongst peers to mean “stupid” and “idiot” and sometimes in describing people with disabilities and learning difficulties.  Depending on the language and culture the word has changed format. For example, “mogolico” in Spanish and “mongool” in Dutch, and different short versions like “mong” and “mongo” in English. The Argentinian Down’s Syndrome organization made a video campaigning to stop using certain insult words including “mogolico”.

-Many Mongolians I’ve encountered are unaware of the negative connotations of “mongol” in other cultures. Did your friends and family understand what you were encountering with the birth of your son Billy?

-When Billy was born we were too busy to worry about the term as he was very ill. So the short answer is, I don’t know because we didn’t talk about it. But now they do because I’m talking about it publicly and campaigning to raise awareness. We were all shocked with the diagnosis and it took us a while to accept the situation. It was a very difficult time, so many things happened in a short spell.

-Loss of loved ones is dealt with very differently in Mongolia than it is in other parts of the world. Can you share a bit about how you faced – and continue to face – that process?

-You are right. In Mongolia, you are not supposed to mention the name of the deceased. Also they say you should not visit the grave again for three years. I think it’s to do with the traditional way of laying the body of the person on the open ground instead of burying them under the soil. Just before our son passed away we had a Christian chaplain and a Buddhist nun bless him. The hospital arranged this when we requested it. I felt that having the Buddhist nun’s prayers there before and after my son’s death helped me. That was the way I knew my parents and relatives said goodbye when someone close to us died. She had her full Buddhist robe and her praying beads, making it complete for me. I would have felt it differently otherwise. Perhaps, something important was missing. I don’t practice any religion in general, but times like that brings out different sides to us all. I’m grateful to the hospital for arranging it and the nun who was very accepting and kind.

After about six weeks after our son’s death, I started writing a blog in English to him. As I mentioned before, bringing up someone’s name after they passed away was thought to be not right and would bring bad karma in Mongolian culture. Also I didn’t want my parents to read my pain. I still write the blog and our children can talk about their late brother and visit the cemetery with us. They sign their birthday and Christmas cards including their late brother’s name. I kept the Mongolian tradition of putting some food for the gods, so we put a piece of cake for our son in front of his photo and light candles every day. I think everybody is different and deals with grief in their own way.

-Memoir can be a challenging genre for writers. Were there any particular challenges for you in writing about your journey as a young woman and as a mother?

-Yes, there were challenges to do with privacy and expanding some uncomfortable topics. I wrote about Down’s syndrome to raise awareness and acceptance in society and to be a voice for many mothers who are unable to speak out. Me and another mother set up an online support group for Mongolian people with disabilities and parents with children who have disabilities or learning difficulties. We used Facebook, as it was easy to connect with Mongolians around the world. The group is a private group where people can interact with each other without being judged and seek help from one another. I needed that kind of support when we had our son.

Down’s Syndrome Scotland and the Down’s Heart Group UK were very supportive. Even in so-called “developed” countries, some people can be not that open-minded. My husband is a supportive person who accepts me the way I am and that respect gave me the freedom to write and talk about all these sensitive issues.  I felt it was important to give a voice to those women who are carrying the guilt of having disabled children and becoming victims of domestic abuse not only from their husbands, but also their-in-laws and society.

Also I realize that it’s important to raise awareness about Down’s syndrome in Mongolia. After my initial contact with TEDx Talk organizers in Ulaanbaatar, the Mongolian Down’s Syndrome Association Chair, Ariun, delivered a very informative TED talk a couple of years ago. I hope to do more work with them in the future.

-Mongolia is very slowly incorporating policy and practice designed to improve the lives of marginalized individuals living with disabilities. What advice can you offer people who are working towards those goals or struggling with what can often be an unwelcoming world outside of the home?

-I think it is getting better, however there’s still a lot that needs to be done. I recently saw a photo on the internet of a wheelchair ramp outside a supermarket in Mongolia. At the end of the ramp there was a bin, with no room for the wheelchair to get past the bin. Also the ramp looked quite steep. I think that picture represents how the policies and practices are at the moment. I’m not sure if there are any legal requirements in place yet to standardize those kinds of practical improvements.

Another area that worries me is nurseries for disabled children. I know in our online group, there are a couple of parents who run these types of nurseries because they had to. They needed a safe environment to bring their children to, and most importantly, develop their social skills.  To deal with vulnerable children, nurseries need properly trained and vetted staff. For that, these nurseries need extra help and support from the government. I think it is a very urgent and important matter.

-You’ve served as a Mongolian ambassador of sorts in your community. What have been some of the strangest or most surprising questions or comments that you’ve encountered?

-It depends on people’s background like many things. Here are some common ones I’ve heard when I tell people where I’m from:

*Mongolia, Europe? Mongolia, Africa?

*My friend’s son is married to a girl from the Philippines.

*Oh really?! I thought it was a made up country!

-Are you still planning to publish a Mongolian language version of “Mongol”?

-Yes – it’s still in the drafting process.

 

“Mongol” can be purchased in e-book format for the Kindle on amazon.co.uk, where the paperback version is currently available for pre-order.

 

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