By Uuganaa Ramsay

[Copyright: Reuters]

“It’s better to have your bone broken than your name broken” – Mongolian proverb

In the 1860’s Dr John Langdon Down suggested that a number of his patients bore a resemblance to people from Mongolia. He named them ‘Mongolian idiots’ and this became a term for individuals with what was later termed Down’s syndrome. Over time, this caused a spiral of misinformation and linguistic misrepresentation that still permeates language internationally.

In 2019 Down’s Syndrome Scotland ran a campaign following a survey they made.

“…we were surprised that the results of the survey revealed the word ‘Mongol’ was still used so frequently in society today.” (Kerry Lindsay, Communications Manager of Down’s Syndrome Scotland)

The Down Syndrome Scotland’s Language Guide aims to raise awareness, challenge inappropriate language and tackle negative stereotypes. The Guide includes the word “Mongol” as one of the “don’t say” phrases.

I’m originally from Mongolia and grew up speaking the Mongol language and calling myself a Mongol. Sometimes people think that “Mongol” refers only to the 13th Century, and to the Mongol Empire.

These meanings collided for me when our Scottish-Mongolian son was born in 2009. While diagnosing Billy, medical workers had different opinions. Some raised their concern about Billy’s condition suspecting Down’s syndrome but others dismissed it suggesting that it was to do with my ethnic background. A blood test soon confirmed that Billy did indeed have an extra chromosome 21 and had Down’s syndrome. He died at three months old due to complications related to the condition. While grieving, I wrote my memoir “Mongol” in memory of Billy, making him live on in books and in history.

Now my memoir Mongol is on the reading list for several university courses in the UK. I have been invited to speak to students, NHS staff and the wider public including the World Down Syndrome conference at the United Nations.

In 1958 French geneticist, Jérôme Lejeune discovered that Down syndrome was caused by an extra copy of chromosome 21. Sadly, from my own experience, young people have been warned not to introduce themselves as a Mongolian or Mongol by their French-speaking teachers and friends. The word Mongolian can mean someone with Down’s Syndrome or a slang word for stupid in France and Québec, Canada. This has created upset and hurt for young people and parents of Mongol ethnicity who feel degraded and insulted.

Nineteen international scientists including Jérôme Lejeune and Langdon Down’s grandson wrote to the editor of the Lancet in 1961 requesting the term no longer to be used:

“… The occurrence of this anomaly among Europeans and their descendants is not related to the segregation of genes derived from Asians; …and the increasing participation of Chinese and Japanese investigators in the study of the condition imposes on them the use of an embarrassing term.”

Even though the World Health Organisation included “Down’s disease” in The International Classification of Diseases in 1965, we are still coming across medical cases in different countries. Recently, a pregnant Mongol lady contacted me from Germany. She turned up for her antenatal appointment and noticed the Down’s syndrome test information included the word ‘mongolisme’. The clinic changed the wording on their website after we campaigned on social media.

To make matters worse, the derogatory term and its variations have been used by comedians and celebrities to ‘push boundaries’ as joke punchlines. The sad thing is many people are not aware of the history and repeating what is seen as the norm.

Recently, myself and other activists have founded a non-profit organisation based in Scotland and operating internationally. We plan to work with international organisations and global communities promoting equality and diversity in order that people are treated as equals, with dignity and respect, and that differences are celebrated. We will work hard to protect and promote the human rights of people affected by hate speech and degrading treatment in these circumstances.

A British mother with a son who has Down’s syndrome tweeted me recently: ‘This is a long overdue issue that needs to be put to bed once and for all. And you will do it, you will change it I just know.” I replied “Yes, WE will do it together.” I hope you will join us too.

Uuganaa Ramsay was born in Mongolia and grew up in a yurt, living a nomadic life eating marmot meat and distilling vodka from yoghurt. After winning a place on a teacher-training course she came to the UK, and now lives in Scotland. Uuganaa won the Scottish Asian Women’s Award For Achievement Against All Odds presented by Nicola Sturgeon, First Minister of Scotland. Mongol, her first book, won the Janetta Bowie Chalice Non-Fiction Book Award from the Scottish Association of Writers.