An interview with Uuganaa Ramsay

Uuganaa Ramsay

“Addressing both hate speech and misinformation regarding Down syndrome

Uuganaa Ramsay is the founder of Mongol Identity, a non-profit organization whose mission is to bring about a greater understanding of the word Mongol in order to end the misuse of the term when referring to people with Down syndrome. 

Uuganaa was born and raised in Mongolia and now lives in Britain. Her mission to end the misuse of the term comes from a unique angle, which results in a twofold motivation. Uuganaa started writing and campaigning in 2010, following the death of her son Billy – who had Down syndrome. In 2014, Uuganaa published Mongol. Mongol is an award-winning memoir of her life as a Mongolian, juxtaposed with the story of Billy’s short life.

In February this year, following a campaign led by Mongol Identity, Oxford University Press announced that the words mongol, mongoloid and mongolism are to be removed from the Oxford Advanced Learner’s Dictionary. We speak with Uuganaa about her advocacy and the unique private and cultural background that inspired it.

Uuganaa’s son Billy, private archive

How did the word mongol become a slur word for Down syndrome, and what were the key points in the history of the misuse?

As you will know, the word ‘Mongol/mongol’ has multiple associations. In addition to describing a person from Mongolia, it is also used as a derogatory term for a person with Down syndrome and, more generally, as an insult referring to someone stupid. The associations have their roots in the 19th Century pseudo-sciences of ethnic classification and phrenology, when John Langdon Down classified people with Down syndrome as ‘Mongolian Idiots’. His opinion was that they shared some of the facial characteristics of the ‘Mongoloid’, the racist classification used in the West to describe people from Mongolia, China and Japan.

In the 1960s, geneticists campaigned to have the ‘Mongolian Idiot’ (and associated variations) replaced by ‘Down syndrome’, reflecting a growing concern at the racism at the root of the term. By 1965, the World Health Organisation’s classification of diseases dropped any links between ‘Mongol’ and ‘Down syndrome’ and it was assumed that this association would fade over time.

What is the current situation, globally, regarding the use of this word as a slur for people with Down syndrome?

The associations between Mongol, Down syndrome and stupidity still persist. As recently as October 2020, Formula 1 driver Max Verstappen caused uproar when he called a rival a ‘Mongol’. The social media response which followed showed that many had no idea why this use of the word Mongol was offensive, and saw it merely as interchangeable for ‘idiot’. There was little recognition that using the term as an insult is both deeply racist and discriminatory. When Max Verstappen made his comments, we found a lot of people on social media defended his use of the word by saying ‘Mongol is in the dictionary and it means someone who is stupid or someone who has Down syndrome.’

Mongol Identity SCIO was established to challenge and change the pejorative uses of ‘Mongol’. Through education, it seeks to promote an understanding of Mongol culture and to address the racism and discrimination that underpins the use of ‘Mongol’ as an insult.

One approach the charity has taken is to engage with publishers to help improve the definitions of Mongol provided in dictionaries. Some have responded to the challenge with relish. One example is that of Oxford University Press, which has removed references to pejorative uses of Mongol from its Advanced Learners’ Dictionary.

“Having reviewed the evidence for the words ‘mongol’, ‘mongoloid’, and ‘mongolism’, we have decided to remove these terms from the Oxford Advanced Learner’s Dictionary. The terms are no longer widely used and therefore not helpful to current learners of English.”

You are forced to thread a thin line between Mongolian national dignity and anti-discrimination of people with Down syndrome, connecting both fronts into one. Someone might argue that Mongols should not be ashamed of this slur, as it connects them with a community of people who deserve dignity and respect. On the other hand, one might also argue that the people with Down syndrome should not mind being called “mongols”, as it associates them with a proud nation. What would you say to both? 

We need to understand we are addressing hate speech as well as misinformation regarding the diagnosis of Down syndrome. Both Mongols and people with Down syndrome are affected by this misjudgment and insult. It’s not about being compared to one another. It could have been any condition or any ethnicity. The problem source is the racist theory behind it showing superiority over one human being to another.   

What are your plans for the future in regards to putting an end to the misuse of the word Mongol?    

Mongol Identity SCIO started working with international dictionaries to improve the definition. As mentioned before, the approach is educational. We are here to learn from one another and with our own Down syndrome community, we can work together on normalizing the word ‘Mongol’ and educate others. We will continue to monitor films and media, medical terminologies, and the press. The other main work is to raise awareness on the Mongol world through arts, education and social awareness showing people what the authentic meaning refers to. The Mongol culture is rich and there’s so much that the world can enjoy finding out more about these people and their culture. There are over 10 million Mongols around the world living and working among us.

Your book Mongol presents your experiences from a number of realms and angles. What was the unifying driving force that compelled you to write it?

I wrote my memoir in memory of my son Billy and for my other children as they are growing up in Britain which is very different from my Mongolian childhood. I felt it was important to share my story with the world because so many of us go through heartbreaks and happy times yet very few of us share our story in an honest way. There’s a lot of stigma attached to diagnosis and labels and instead of living our life and enjoy being who we are, we end up trying to prove our existence battling with inequalities and misrepresentation.

In your book, you describe having had some obstacles in explaining your son’s  diagnosis to your family and friends in Mongolia. What are today’s challenges for our community in Mongolian society? 

As we know any diagnosis brings upset and anxiety. The challenges are the same as many countries. Mostly parents are the ones who make things happen and ask for change in the system. The society has become much more accepting since 2008 after the Mongolian Down Syndrome association was formed. Prenatal diagnostic testing is not as widely used due to the geographic stretch. Some Mongols are nomads and they live in rural areas where they are miles away from the nearest medical facilities. Because of this there are consequences. Good and bad. The good – as many of us know over 90% of babies diagnosed with DS prebirth are aborted in the UK. So there is less discrimination in Mongolia. The bad – families can be too far away from medical help when children are born with congenital health issues.  

Is there any negative term in Mongolian for people with Down syndrome? 

None specifically for people with Down syndrome.  

What do you perceive as the main challenge for the global Down syndrome community? 

I work in education and employment. Our challenge is to have an educational system that is more than a creche and to build integrated employability programs involving employers and independent living.   

An interview with Dr Calum MacKellar – Part 2

“Equality in value and worth is the foundation of civilisation”

Part 2

< Part 1 of the interview

In most of the countries where abortion is legal up to a specific gestational age, there are exceptions in cases of “serious congenital or genetic disorders” that allow abortions up to term. Historically speaking, can you provide any insight into the argumentation for such legislation – what arguments, if any, were provided and if there were any, where do they stem from?

In the UK, it was only in 1990 with the Human Embryology and Human Fertilisation Act that abortion law allowed prenatal disabled children to be aborted up until birth. This means that physicians can even cite disabilities such as cleft palate or a malformed hand as ‘serious abnormalities’ deserving a late abortion.[1] This came about through a kind of last-minute haggling and trade-off in Parliament in 1990 in exchange of other provisions that were being proposed. It was not really thought through.

What do you think is the reason for numerous and world-wide negative experiences people have with medical practitioners advising or pressuring them to terminate in the case of an indicated or diagnosed Down syndrome pregnancy? 

I believe a number of medical practitioners are not sufficiently trained to give impartial advice. They should also remember that they are experts in medicine but that the notion of a ‘value of life’ is beyond the realm of medicine. In addition, many may not have sufficiently thought through their own value system. They should be challenged about this and whether they actually believe that all persons are absolutely equal in value and worth. Finally, they should learn to see all persons as having immeasurable value and not just see disorders, problems and dysfunctions.

Do you discern any promising lane of reaching the universal illegality of eugenic choice from the very start of a biologically human life with congenital or genetic untypicality?

I believe we have to remind society, again and again, that everybody is absolutely equal in value and worth, no matter how young, old, abled or disabled they are. That is the foundation of civilization. Without the concept of equality in value and worth of all individuals, civilised society would eventually collapse.  

Recent PR articles and studies indicate that there are some developments regarding the setting up of the algorithms and the methodology of prenatal testing for Autism Spectrum Disorder. What would be your thoughts and insights on that?

If the prenatal testing is performed in order to better welcome the prenatal child into society and for the benefit of this child, then I would support the procedure. If, on the other hand, the prenatal testing is undertaken with the aim of aborting any child with a disorder, I would find this barbaric and eugenic.

Is there any state-regulated framework regarding data privacy concerns that may be raised concerning cfDNA and NIPT, accounting for the vast pool of genetic information obtained?

I am not quite sure if any such framework exists. The use of biomedical data is regulated at the Council of Europe level. Whether it is sufficiently regulated to address all possible concerns is another matter.

Regarding Heidi Crowter’s case in the UK: what would be the consequences of a ruling against Heidi’s legal challenge? And if she wins, what consequences for the prenatal screening apparatus and the countries with similar laws do you expect?

I believe that Heidi Crowter’s case is extremely important. If she loses, the message given to society would be that people like her should not exist. That there is such a thing as a ‘life unworthy of life’ which was one of the main Nazi slogans during the Third Reich. It would also mean that every person in society would be able to be categorised on a scale of value and worth.

If Heidi Crowter wins, on the other hand, it would mean that any eugenic procedure is unacceptable because all persons, and all possible future persons, are completely equal in value and worth. And if all future persons are equal, any (eugenic) selective procedure becomes meaningless.


[1] Surgical Interventions for Congenital Anomalies, Farmer D, Sitkin N, Lofberg K, Donkor P, Ozgediz D. Essential Surgery: Disease Control Priorities, Third Edition (Volume 1). Washington (DC): The International Bank for Reconstruction and Development / The World Bank; 2015 Apr. Chapter 8

Image by The Christian Institute

An interview with Dr Calum MacKellar – Part 1

“Equality in value and worth is the foundation of civilisation”

Part 1

Dr Calum MacKellar is one of the leading contemporary bioethicists. He is the Director of Research of Scottish Council of Human Bioethics, a Fellow of the Center for Bioethics & Human Dignity at Trinity International University, Chicago, USA, and a Visiting Lecturer and Visiting Professor in Bioethics at St Mary’s University in London. He was also a senior civil servant with the Bioethics Division of the Council of Europe in Strasbourg, France. Dr MacKellar is the author of several books, including The Image of God, Personhood and The Embryo and Cyborg Mind; he also co-edited The Ethics of New Eugenics. His latest book is entitled Christianity and the New Eugenics: Should We Choose to Have Only Healthy or Enhanced Children?. Dr MacKellar was kind enough to answer some questions for Saving Down syndrome.

We are speaking on the grounds of Down syndrome. What would be your take on the genetic categorisation of people with Down syndrome in comparison to the rest of the population? As it is a stable karyotypic constitution, would you call Down syndrome a variant of the human genome, a departure from standard or simply a disorder? In genetic terms, is there a scientific reason for hierarchy?

Personally, I would simply consider Down syndrome as a variant of the human genome. We all have different genomes (apart from identical twins) and we are all different biologically. It is very difficult to define what is ‘normal’. Is anyone really normal?

From a purely scientific perspective there is no reason for any hierarchy in disorders. But then again, science cannot give any real value and worth to anyone. From a purely scientific perspective we are all just piles of worthless biological cells. 

The previous question is closely connected to the concept of normalcy. People with Down syndrome are in the jeopardy of being seen as “less human”. What is your take on that?

In the same way as there is no definition of what is a ‘normal human being’, there is no definition of the ‘human’. Even the Council of Europe has not defined what ‘human’ means though the European Convention on Human Rights mentions the ‘human’.

What matters is whether an individual is a person. And individuals with Down syndrome are certainly persons like any other person.

What would be your definition of eugenics?

The definition of eugenics that the Scottish Council on Human Bioethics (SCHB) uses in its book on the topic (The Ethics of the New Eugenics, Berghahn Books, 2014) is: “Strategies and decisions aims at affecting, in a manner which is considered to be positive, the genetic heritage of a child, a community or humanity in general”.

The SCHB is completely opposed to eugenics since it undermines the concept of equality in value and worth of all human beings in society.

There is a sharp discrepancy between the bioethical reasoning on selective abortions and the situation in the field. How would you explain the fact that such practices have been normalized in the population and even unofficially encouraged by the system, in spite of being almost self-evidently eugenic?

Abortion has been normalised in society because of a number of factors, including: (1) The fact that many people begin to consider something as normal and acceptable when it is legalised by their parliament; (2) The media are often really encouraging society to see abortion as normal and acceptable; (3) The general public is often not that well informed about what is really going on relating to abortion (because the media have their own agenda).

For example, the BBC (which is financed by the UK government) have now clearly stated that they will only talk about Pro-choice and Anti-choice individuals (and never Pro-life and Anti-life).

The Down syndrome community is in obvious jeopardy of eradication, yet many parents and pertinent institutions do not see the availability of eugenic “choice” as an issue. What would you say to them?

There is a lot of misunderstanding in society about eugenics. In fact, the word may not even be used. Instead, an expression such as ‘Therapeutic Selection’ may be employed. It sounds a lot more positive and medical. Most individuals who have an abortion in the UK, especially since counselling is not obligatory, have no real understanding of all the ethical challenges related to abortion.

(To be continued)

Image by The Christian Institute