*After my letter to Libby Weaver I had a reply with an apology and she updated her website and her Facebook post.
*Also the issue was discussed on EagleTV News in Mongolia.
*Then I was contacted by STUFF.co.nz and the following article was published in New Zealand.
*The same article was translated into Russian too.
An Open letter to Libby Weaver from a Mongol
Dear Libby,
I had never heard of you until a contact at the United Nations sent me a link to your apology for your misuse of the term “mongolism” in your book “What Am I Supposed to Eat?”. The article was in Mongolian. You were probably unaware that word of your mistake had travelled the globe and reached Mongolia itself.
Throughout 7 November people tagged me online and tweeted links to your article to me. I was both angry and sad reading about what had happened and extremely surprised that in this day and age you had no idea about the background and history of the word “mongolism”. It is not sufficient to describe the word as offensive – although it certainly is when used in reference to those with Down’s syndrome. The issue is more complex than this.
I decided to write to you as one author to another. My book, published in 2014, was written in memory of my late son Billy and was entitled “Mongol”. Like you, I wrote to educate people, but in my case it was through my and my son’s story. Billy would have been eight years old this month. Billy was a Mongol not because he had Down’s syndrome but because he was my son. I come from the country of Mongolia and so I am a Mongol. I grew up singing the songs, reading the books and writing stories of the Mongol culture, told through the Mongol language. This is the perfect use of the word “Mongol” – and we refuse to have its meaning in this context described as “derogatory”. I’m writing to you to encourage you to use the word “Mongol” – but correctly. You might find it useful to listen to this BBC radio documentary which explains in greater detail – http://www.bbc.co.uk/programmes/b04ps15y .
You have rightly apologised to the Down’s syndrome community. We now request that you consider a similar apology to the international Mongolian community for your lack of consideration of the complexities and sensitivities surrounding the use of words based on the term “Mongol”.
So please use the word Mongol again and loudly – in its original and authentic meaning.
Kind regards,
Uuganaa Ramsay
My thoughts about the new NIPT tests
In my day job, I’m a Careers Adviser and my role involves working with young people with learning difficulties and disabilities and supporting them to achieve employment, training and independent living.
This morning I received quite a few messages people telling me about the new NIPT.
According to National Coalition for Health Professional Education in Genetics (NCHPEG):
NIPT, which analyzes cell-free fetal DNA circulating in maternal blood, is a new option in the prenatal screening and testing paradigm for trisomy 21 and a few other fetal chromosomal aneuploidies.
I turned on BBC Radio Scotland and heard Lynn Murray from Don’t Screen Us Out campaign.
This test has been controversial and topical, but I feel it’s more than a test. We are arguing about the economical, social and medical sides. Here’s what I think.
“What do you think of the new screening test for Down’s syndrome?” someone asked me on Twitter a few months back. The answer was not straightforward one. I answered: “It depends which angle you are looking at it from, whether it’s scientific, medical or emotional.”
Today, visiting my late son’s grave made me appreciate the time we had with Billy. I had the chance of loving him in my arms, feeding him, kissing him and he brought smiles on his little siblings’ faces. They adored him greatly.
Before you ask, no, we didn’t do any tests to check whether he had Down’s syndrome or not. None of our kids were tested. We felt that once their little hearts started to flutter they were our babies. Whoever wanted to come and join our family we welcomed them.
As with many diagnoses or any unexpected news we were shocked and grieved when we were told about Billy’s extra chromosome 21. We are only human.
Six years on after Billy’s death, the new NIPT test is being discussed. I have some concerns about the new test not only as someone who campaigns for human rights but also as a mother and a career coach. I work with young people with learning difficulties and disabilities as part of my job, advising and supporting them through career planning. From applying to college and any employment opportunities it is clear that they feel the discrimination. In an application form they are very aware of what to put in regards to which school they went to. That’s even before the interview stage, before coming face to face with the interviewer, and not having been given the chance to show how capable they are, how wonderful their personality is. I feel that the new screening test mirrors this type of discrimination in society. People with extra chromosomes can be written off as soon as it is discovered.
With the existing tests, already over 90% of babies with Down’s syndrome are aborted before birth in UK. It’s important to consider that the parents of those babies aborted before birth might be the ones having already made decisions about equality, and thereby screening college and job applications. With the new screening NIPT tests, the decisions to abort are likely to increase. I’m not saying people shouldn’t have the tests. We chose to have a test for our youngest who was born after Billy. We needed to know and be prepared. The important thing is that parents should be given balanced information about life with a child with Down’s syndrome. When introducing new tests we need to be aware that they are carrying many messages in our society.
I support the campaign ‘Don’t Screen Us Out’ and agree that a medical reform is needed to support parents who have a diagnosis or probable expectation of Down’s syndrome. These consequences would have a profound long-term effect on the population of the Down’s syndrome community and how society accepts disability.
Mongol in Thai!
Extremely excited to see my book in Thai language. Currently, we can see it on my Thai publisher’s website and I will post a photo of it as soon as I have it in my hand.
The publisher is Sanskrit Book and let’s hope this is the first of many languages!
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| หญิงสาวชาวมองโกเลีย เธอเกิดและเติบโตในกระโจมของครอบครัวมองโกลขนานแท้ กินเนื้อมาร์มอท กินโยเกิรต์ทำเองจากนมแพะ ต้มเหล้าวอดก้าและเรียนรู้เรื่องเลนิน เธอพบรักและย้ายมาอยู่สกอตแลนด์ ต้องเผชิญกับการสูญเสียลูก ท่ามกลางชีวิตที่อยู่ระหว่างสองวัฒนธรรม หนังสือที่ได้รับรางวัลจากสมาคมนักเขียนชาวสกอตแลนด์ |
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เรื่องย่อฉันเกิดในบ้านที่เราเรียกว่า กีร์ มันเป็นกระโจมทรงกลม อูกานน่า แรมเซย์ หญิงสาวผู้ภาคภูมิใจ |
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ทดลองอ่านเราเห็นสิ่งต่างๆ ไม่ใช่อย่างที่มันเป็น เราเห็นมันอย่างที่เราเป็น “จูบหนูอีกทีสิคะ” ฉันบอกพ่อที่กำลังจะก้าวเท้าไปยังประตูขาออกของสนามบิน สามเดือนก่อน หลังจากบิลลี่เกิด ฉันคุยกับพ่อทางโทรศัพท์ “พ่อต้องมานะคะ หนูจะไม่ยกโทษให้เลย ถ้าพ่อไม่มา” ด้วยเหตุนี้ พ่อถึงยอมทิ้งงานทุกอย่างและเดินทางข้ามโลกจากดินแดนแสนห่างไกล– มองโกเลียนอก ประเทศที่ฉันเติบโตและพำนักอยู่ในช่วงยี่สิบเอ็ดปีแรกของชีวิต น้องสาวของฉันเล่าให้ฟังในภายหลังว่า พ่อพูดว่า “ลูกสาวฉันไม่ร้องไห้ง่ายๆ แต่เธอสะอื้นตอนพูดโทรศัพท์ ฉันต้องไป” |
Talks at the United Nations
On 21st March 2016, I attended two events at the United Nations Headquarters in New York.
The first event was chaired by Mr S.Sukhbold, the Permanent Representative of Mongolia to the UN and Dr Nata Menabde, executive director of the New York City branch of the World Health Organization (WHO) and Mr Andrew Boys, the Director of Down Syndrome International attended the event. The event was co-sponsored by Permanent Missions of Australia, Brazil, India, Iran, Israel, Japan, ROK, Luxembourg, Mongolia, New Zealand, Poland, Qatar, Singapore, the United Kingdom, UNDESA, UNICEF, International Disability Alliance, Inclusion International and Down Syndrome International.
It was a very important historical event as for the first time ever, the misuse of the word ‘mongol’ was addressed at the UN. The staff at the Permanent Representative of Mongolia to the UN welcomed me with open arms and made this event happen coinciding the World Down Syndrome Day conference.
The second event was the Wolrd Down Syndrome Day Conference itself. This year’s theme was “My Friends, My Community” – The benefits of inclusive environments for today’s children and tomorrow’s adults.
My speech was on inclusion and language. “Changing stereotypes against people with Down syndrome: THE MEANING OF MONGOL”
World Down Syndrome Day Conference 2016
United Nations, New York.
While I was in New York, the UN Radio interviewed me for their website too. I was very grateful to have our voice heard worldwide. If you want to see the slides of my speech you can visit the World Down Syndrome Day website.
BBC World Service – The Meaning Of Mongol
We thank the American and Canadian film companies who respect other human beings and their identity with dignity. The US film companies including Yerba Buena Center for the Arts in San Francisco, Facets Cinémathèque in Chicago, Nort West Film Center in Portland put disclaimer on their websites, read out before the film screening and wrote blog posts.
Our voice was heard on NewsHour programme on BBC World Service. BBC reporter Matt Wells interviewed Bolortsetseg Minjin and Azaa Tsogtsaikhan who we worked very closely during these few months.
I was also on Kaye Adams show on BBC Radio Scotland. It was lovely to meet Louise White and enjoyed my interview with her. Here’s the link to the podcast.
Finally, the broadcast which meant a lot to us was aired. The BBC World Service broadcast The Meaning of Mongol last Wednesday. It was emotional to hear it again and knowing that Billy’s story reached millions. I am grateful to many people including my producer who got what this programme means to me, to us.
What next? I would love to see my book on screen…
Our Statement on ‘Mongoloid’ Usage in ‘The Guitar Mongoloid’
On behalf of Mongolians and Mongols around the world, we want to express our deep disappointment and concern in relation to the use of the term “mongoloid” in the context of the film “Guitar Mongoloid” directed by Ruben Östlund.
We are shocked and disappointed to learn that the film festival organisers and programme managers in Sweden, US and Canada did not take a stand in strong opposition to this title despite its historical or artistic value. According to The Washington Post it took its title from a boy with Down’s syndrome.
“The term “mongoloid”, referring to people with Down syndrome, was dropped by the World Health Organization in 1965 because it was and still is considered to be offensive to those of Mongol ethnicity.
Dr. John Langdon Down, who discovered Down’s syndrome in the 1860s, used “mongolism” and “mongoloid” to describe the syndrome as he stated that there were similar physical characteristics with people from Mongolia and Mongoloid race (those of Asian ethnicity). This phrase was used until the 1960s, when scientists petitioned to use “Down’s syndrome” instead of “Mongolism” or “Mongoloid”.
Furthermore, in many countries, the word has come to be used as a term of offense. There are many campaigns around the world trying to stop the hurtful and offensive usage of “mongoloid” and to promote the original meaning, namely, “related to the culture, language and people of Mongolia.”
Therefore, we request that Ruben Ostlund and Comeback Company change the film title, out of respect, human kindness and compassion towards vulnerable members of society as well as the mongolian culture and nation with its rich history and unique standing in the world.
– Mongolian NYC Community
– Mongolian Association in the UK
– Mongolian Association in Canada
– “Tsahim Urtuu Holboo” TBB (NGO) online community of Mongolians around the world
On Tuesday 20 January, the BBC marks the 750th anniversary of the first elected parliament at Westminster and 800 years since the signing of Magna Carta with Democracy Day – a day of live events, discussions and debate. So we thought we would join the discussion with some tweets.
If you support what we are doing and would like to tweet, here are some ideas:
Why is it still acceptable to use the word #Mongol revealing worrying social attitudes towards disability? #BBCDemocracyDay
Please stop using the word #Mongol to describe someone with a learning disability or a stupid person. #BBCDemocracyDay #humanrights
Use the word #Mongol to describe the original meanings: Mongolian people, culture and language. #BBCDemocracyDay #Langauge
#Mongol -the word I grew up using to describe who I am, reading it in poems, singing it in songs & writing stories with it. #BBCDemocracyDay
#Mongol – it represents my identity and culture. #BBCDemocracyDay #Mongolia
Please stop misusing the word #Mongol to ‘push boundaries’, ‘to look cool’ and win your fans!
#BBCDemocracyDay #Comedy
Here are some links to use in your tweets:
BBC News – The Meaning of Mongol – http://www.bbc.co.uk/news/blogs-ouch-30129358
BBC Radio 4 – The Meaning of Mongol – http://www.bbc.co.uk/programmes/b04ps15y
Why are the words ‘mongol’, ‘mongoloid’ and ‘mongy’ still bandied about as insults? http://www.independent.co.uk/arts-entertainment/tv/features/why-are-the-words-mongol-mongoloid-and-mongy-still-bandied-about-as-insults-9878557.html
Please use some photos in your tweets too. See you on Twitter!
January 16, 2015
Dear Mr. Östlund and Mr. Hemmendorff,
We are writing to you as ethnic Mongolians regarding your film “The Guitar Mongoloid”, which is being shown as part of film festivals in New York, Maryland and California.
We are deeply concerned and hurt by the use of the term “mongoloid” in the context of your film and are requesting that you change the name of the film in the nearest future, out of respect to the Mongolian people and to the international Down syndrome community.
The term “mongoloid”, referring to people with Down syndrome, was dropped by the World Health Organization in 1965 because it was and still is considered to be offensive to those of Mongol ethnicity.
Furthermore, in many countries, the word has come to be used as a term of offense. There are many campaigns around the world trying to stop the hurtful and offensive usage of “mongoloid” and to promote the original meaning, namely, “related to the culture, language and people of Mongolia.”
We do not expect you to reconsider your decision to show the film. However, we request the following:
Please read more about the use of this offensive term at the link:
Thank you, in advance, for your sensitivity to this issue. We look forward to your response.
Regards,
– Mongolians NYC Community
– Mongolian Association in the UK
– “Tsahim Urtuu Holboo” TBB (NGO) online community of Mongolians around the world
A fellow Mongolian living in New York informed me about the film ‘The Guitar Mongoloid’ directed by Swedish Director Ruben Östlund showing in The Film Society of Lincoln Center in New York from today. According to The Washington Post ‘… Ostlund’s 2004 debut features disjointed vignettes about characters dwelling on society’s fringes. It takes its title from a boy with Down syndrome (Erik Rutstrom) who busks on the streets, whaling away tunelessly on a guitar while screaming obscene lyrics. But the other sequences, which focus on vandals, a woman with an apparent obsessive-compulsive disorder and drunks playing with guns, are equally odd.’
Here’s my email to the film festival organisers of The Film Society of Lincoln Center, AFI Silver Theatre and Cultural Center and Yerba Buena Center for the Arts in San Francisco.
Dear Sir/Madam,
I am writing to you as a Mongolian and as the mother of a child with Down’s syndrome.
I learned today about the film “The Guitar Mongoloid,” which will be shown as part of your film festival.
The term “mongoloid,” referring to people with Down’s syndrome, was dropped by the World Health Organization in 1965 because it was (and is!!) considered to be offensive to those of Mongol ethnicity.
Furthermore, in many countries, the word has come to be used as a term of offense. See, for example, http://www.dailymail.co.uk/
There are many campaigns around the world trying to stop the hurtful and offensive usage of “mongoloid” and to promote the original meaning, namely, “related to the culture, language and people of Mongolia.”
I do not expect you to reconsider your decision to show the film. However, it would be a gesture of respect to the Mongolian people and to those with Down’s syndrome to tell the audience, before the film is shown, that the term “mongoloid” is offensive both to Mongols and to the international Down’s syndrome community.
You can read more about the use of this offensive term at http://www.independent.co.uk/
Sincerely,
Uuganaa Ramsay
