Interview with the Founder of the Down Syndrome Association of Mongolia V. Ganzorig.

-When was the Down Syndrome Association of Mongolia founded? What activities have you conducted targeted to the society?

-At the beginning of 2000, the parents founded the Down Syndrome Association of Mongolia (DSAM) NGO together. About 20 years ago, there were very few people, special schools, and psychologists who were aware of Down syndrome in Mongolia. This was the main reason for forming the association. Until the beginning of this year, I worked as the Chairman of the Board of Directors of DSAM and currently, I am working as a consultant in charge of foreign relations of the Down Syndrome Association of Mongolia.

We set a goal to make every person with Down syndrome a taxpayer of Mongolia. Paying taxes means having a job, having your own income, and living independently. To have a job, you should have a certain level of education and profession. The most important thing is to be healthy for doing household or service work and studying. Health, education, and employment are the three cornerstones of our association.

The parents who founded the NGO were foreign language-speaking persons. Since there was no manual on Down syndrome in Mongolia, they translated the manual from English and Russian and obtained the copyright. We went around family clinics and gave information and advice about Down syndrome. In reply to an inquiry among the Association members "Who was the person who hurt you the most?" the answer with the highest percentage was "Doctors". Due to the lack of knowledge and information about Down syndrome at that time, when a child with Down syndrome was born the physicians said "Keep calm. Your baby will not survive long.'' Today, the children of that time have become adults and some of them even have become champions of the Special Olympics. We worked hard to eliminate the misunderstanding in Mongolian society. I can say that we have achieved certain results.

-Could you explain Down syndrome? How is the understanding among the population about the characteristics of people with Down syndrome and what kind of help they need? Of course, persons with Down syndrome have the right to live and work among other people...

-Down is not a disease. The words disease and syndrome have different meanings. Disease has a clear cause and is commonly contagious from one person to another, meanwhile, a syndrome is of unknown cause and is not contagious.

Down syndrome can be simply understood as having more chromosomes. A normal human has 23 pairs or 46 chromosomes in total. A person with Down syndrome has one pair of chromosomes in triplicate.

Usually, the 21st pair is three instead of two. It means that he or she has 47 chromosomes, one more than a normal person. World Down Syndrome Day is on March 21, meaning the 21st trinity. It has been more than 20 years since the United Nations has marked this day. We also observe this day in Mongolia.

-Is Down syndrome inherited? Why are children born with Down syndrome... Is there any research on this?

-There is no connection between race, ethnicity, and the syndrome. It has not been scientifically proven how the extra chromosome is produced during the formation of a child. As the cause has not been determined defined, there is no treatment or cure yet. Maybe the person who finds the reason for this will win the Nobel Prize in health. However, according to international statistics, one child with Down syndrome is born for every 700 births and this risk increases to one in 400 for women over the age of 40. More than 90 percent of people with Down syndrome have the extra chromosome in the 21st pair, and in some cases, the 14th and 15th pairs have triplets. In very rare cases, it is hereditary. People with Down syndrome are classified as mild, moderate, and severe. For example, my child is 21 years old but cannot speak, and communicates with his parents through sign language. However, there is a child who is 5 or 6 years old and whose development is almost indistinguishable from that of a normal child. The ability of a child with Down syndrome differs depending on their level of syndrome. There is an over 10-year-old, who is learning English, Tibetan, songs and dances, and acting in a movie. Therefore, early detection, diagnosis, and leveling of children with Down syndrome are essential.

English doctor John Langdon Down discovered that Down syndrome is caused by chromosomes, and in the 1860s, he wrote a book explaining it under the term Mongolian, with the connotation of stupid. The extra chromosome was named Mongol, and the term meaning intellectual disability spread to Europe and the world almost 200 years ago. Persons with Down syndrome have a different level of physical and mental development and a slightly lower IQ. But it differs according to the level.

-Is there any survey on how many citizens have Down syndrome in Mongolia? How many citizens belong to the Down Syndrome Association of Mongolia?

-Unfortunately, there is no such survey in our country. DSAM has more than 600 registered members. The number of members is increasing every year. However, there are many unregistered persons with Down syndrome.

The most recent Census of Population and Housing included the question "Is there anyone in your family with a disability" but it did not categorize it. Our country has not yet been able to count the number of people with Down syndrome. According to the statistics of the last 5-10 years, 70-80 thousand children are born in Mongolia every year, so it is possible that at least 400-500 children with Down syndrome are born every year, based on the estimation that one child with Down syndrome is born in every 700 births. Children with Down syndrome are often seen on the streets abroad. But in Mongolia, it is the opposite. I have met an adult with Down syndrome twice in my life. There seem to be many reasons for this. First, they have a low life expectancy because there are no accessible health and education services. Most children with Down syndrome are likely to be born with comorbidities. Secondly, parents do not accept their children and keep them at home because they are ashamed of them. Therefore, many people are under house arrest, although they are not visible on the streets. Not accepting your child means you are stifling your child's development. If you accept your child and determine the level of the syndrome, there are many opportunities. In our country, chromosomes are counted in public and private hospitals, and the level of Down syndrome is determined. Appropriate training and health services are provided for him or her. A child with Down develops when it is nurtured from an early age. This year's Oscar was won by a young Irishman with Down Syndrome for the first time. There are also many stars with Down syndrome in art and sports. Boys and girls with Down syndrome played in the Hollywood film "Champions”. In addition, a woman avatar with Down syndrome was created using artificial intelligence, taking pictures of disabled women from different countries. The avatar named Kami is now a superstar on social networks.

-What is the current level of education and employment of people with Down syndrome in Mongolia? Several years ago, a cafe staffed by individuals with Down syndrome was established. Is this cafe still operating?

-DSAM is built upon three fundamental pillars. Firstly, our collaboration with Gyals Medical Center focuses on the health aspect. For the first time, the Gyals Medical Center has introduced the practice of chromosome counting in Mongolia. As a result of the cooperation agreement signed between DSAM and Gyals Center, the Center is now developing a chromosome-specific database. Chromosome analysis is now widely available at most major hospitals in Mongolia. Looking back 20 years, the Down Syndrome Association established a genetics laboratory in partnership with the National Center for Maternal and Child Health of Mongolia. Most recently, during the pandemic, the DSAM, in cooperation with JICA, translated the Down's Syndrome Handbook for parents, doctors, teachers, and volunteers and distributed it to all family clinics.

Secondly, we are actively involved in educational initiatives. Oyun Sanjaasuren, a former Member of Parliament and Foreign Minister of Mongolia is a founding member of DSAM. During her tenure in Parliament, Ms. Oyun played a significant role in leading efforts to amend the Law on Education. Three years ago, a mandate was introduced requiring all schools to take responsibility for the education of students with intellectual disabilities within their respective catchment areas. However, a challenge arose last year when some teachers refused to accept children with disabilities. The teachers were initially unfamiliar with teaching children with Down syndrome, lacking the necessary knowledge and skills to educate and support them. Without proper training, teachers would struggle to manage a classroom with multiple children with Down syndrome. To address this critical need, JICA is undertaking a large-scale project to retrain teachers in special educational needs.

It is also crucial that the amended Law on Education ensures equal access to schools and kindergartens for children with disabilities. We collaborate with special schools in Mongolia. However, based on the advice from developed countries, the concept of special schools is considered a misconception. Children with Down syndrome are educated in regular classrooms alongside their peers without disabilities. Segregated settings such as special schools are not inclusive. Therefore, there is a pressing need for nationwide reforms in the education sector.

Thirdly, concerning employment, children with Down syndrome encounter challenges upon graduating from kindergarten and school. Post-graduation, integrating into society becomes difficult, often leading them to return home due to a lack of employment opportunities or places to spend their free time. In Western countries, it is common for individuals with Down syndrome to find employment opportunities in coffee shops or other service industry jobs. There is progress in Mongolia.

The Asia Foundation has granted a lifetime job guarantee to N. Enkhbayar, a member of our association. This is a great opportunity for him and his family, not only financially, but also mentally and emotionally. The Shangri-La Hotel was one of the first employers of people with Down syndrome in Mongolia. When our association member was hired as a waitress and kitchen assistant, it led to positive changes in the attitudes of other hotel employees. Finding lasting jobs for people with Down syndrome is cumbersome. We need to work with big companies in order to increase employment.

Companies don't know much about this, so they have problems like, how to set up work and to solve problems in the working environment. With the support of JICA, we are embarking on an initiative to train job coaches, a specialized field of study. NGOs will be training individuals as job coaches, and these trainees will then engage with large companies to deliver training, transforming their working environments. In this way, we can create employment opportunities for people with disabilities. This initiative is paving the way for fundamental changes in education over the next 10 to 20 years.

Furthermore, it is crucial for parents to actively participate, supplementing the efforts of the association. A thriving society relies on the collective voice of many, rather than the repeated voice of a few. Through this interview, I emphasize to parents: do not feel shame about your child with Down syndrome, and do not hide them. Parents need to accept their children. By actively engaging with society, just like other parents, and openly sharing positive stories and experiences, we can safeguard our children's rights. This collective effort can contribute to building a society where understanding and equal access prevail. We have the power to make a difference. I encourage you to actively partake in the initiatives of the Down Association of Mongolia, contributing to making meaningful history and legacy in the years to come.

-Down syndrome was historically referred to as "Mongolism" or "Mongoloid," terms that were used in English-speaking countries in offensive and insensitive ways. In the 1960s, the Government of Mongolia officially requested the World Health Organization (WHO) to discontinue these terms. In response, the WHO recommended the adoption of the term "Down syndrome" and decided to stop using these words to refer to Down syndrome. I heard that you are thoroughly researching this...

-In the past 3 or 4 years, I have searched for resolutions issued by the UN and WHO to stop using those terms. I checked the Central State Archives, the General Authority for Archives of Mongolia, the United Nations Archives, the WHO Archives Geneva, and the New York State Archives. Unfortunately, I could not find any documents. However, I discovered two interesting documents. "During the General Discussion of the 18th World Health Assembly held in Geneva in 1965, G. Tuvaan, Minister of Health of the Republic of Mongolia, raised concerns about the improper use of the terms "Mongolism" and "Mongoloid." He emphasized the incorrect meanings associated with these words and urged participants not to use them in this way in the future. Mr. Tuvaan's words were recorded in the WHO Assembly's protocol, but no resolution or recommendation was issued at the time. I think people seem to understand that protocol is an official decision.

The second document is that in the 1960s, a significant change occurred in the understanding of Down syndrome when it was reclassified as a chromosomal disorder rather than a form of intellectual disability. This change was supported by a group of scientists from 19 countries who signed a document advocating for the use of the term "Down syndrome" instead of outdated and insensitive terms like "idiot." In my opinion, these documents are essential.

Cultured and educated people generally avoid using the terms "Mongolism" and "Mongoloid." However, these expressions persist informally in English and French-speaking countries. In Spain, there exists a magazine called "Mongolism" that publishes content ridiculing and criticizing people, like the old Mongolian magazine "Tonshuul" [Woodpecker]. People say they have never heard these terms before. However, numerous examples of their usage continue to surface.

Specifically, a famous French rapper included the concept of "Mongolism" in one of his songs during a concert. Also, before the pandemic, a Dutch Formula 1 driver made a mistake while racing and uttered a curse involving the term "Mongol." L. Purevsuren, the then Permanent Representative of Mongolia to the United Nations Office in Geneva, addressed the issue by sending a letter, demanding accountability for their actions. In addition, there is a lot more evidence. For example, an Australian author used the word "Mongolism" in his book. After facing criticism from the public, the author decided to withdraw all of his books from the market.

As for me, firstly, a citizen of Mongolia, I don't want to be called by those offensive words. Secondly, as the Founder of the Down Association of Mongolia and a father of a child with Down syndrome, I strongly oppose the use of abusive terms to describe people with Down syndrome. Through our work as citizens living in civil society, we are actively advocating for the issuance of appeals and resolutions to stop the misuse of these horrendous terms. We are also calling on all member states of the United Nations and UNESCO to adopt policies and guidelines that promote the use of respectful and inclusive language for people with disabilities.

-In March 2023 you organized a series of activities and the first big debate in Geneva. Linking this debate to the film "Trio" seems to have been a great success.

-After many years of research and planning, we organized an international debate at the headquarters of the United Nations in Europe in Geneva on 21 March 2023 at the 52nd session of the Human Rights Council. More than 200 countries take part in the conference. This topic was included in the session debate, I was a moderator as a Deputy Program Director of the Down's Syndrome Association and a guest. P. Uuganbayar, Head of the "Mongol Todotgol" NGO, founded her NGO in Scotland intending to eradicate the misuse of this term throughout the world and is actively working at the international level. She put efforts to have the terms "Mongolism" and "Mongoloid" removed from all newly published Oxford dictionaries. It was a big success. Her colleague, a doctor of linguistics who lives and works in Canada and the European Commissioner for Disability, took part in our debate. Then, we showed the feature film "Trio" for the first time in the UN hall.

Over the last 20 years, we seem to have done a lot of work in educating the public, and in providing the relevant knowledge and information to the public, including doctors and teachers. However, looking back, we were not able to attract many people. In general, NGOs have limited resources. We work mainly in Ulaanbaatar and have been to 20 aimags whenever possible. With this, I realized that if art is used properly, it can influence people in a short time. That's why we are collaborating with the creators of the film "Trio". It should be understood that our activities are not limited to one film, we also collaborate with other artists. For example, 67 percent of Mongolia's population is under 35. Apart from cinema, young people are interested in art and music. Therefore, producer B. Naranzun's group "Wasabi" is the Envoy of our Association. The group comes to New Year's and children's parties to play with children, make friends and sing songs. Now we are talking about a new joint work and filming in a video. The girls of the group publish a comic book based on their stories. The book tells the story of how they first met a child with Down syndrome.

It should be mentioned that we work as hard as we can, but we cannot reach every child and parent with Down syndrome. There is a need to expand our activities. On the other hand, we should not stop our activities due to internal problems, There is s necessity to be active either in regional and global arenas. By doing this we learn from other countries, and we also started sharing our first experiences. Especially, we began to work on how to influence the public through art. We will develop by enhancing both external and internal connections and learning from each other. We have realized this since the pandemic, therefore we make efforts to ensure the protection of human rights and children's rights.

-Through the film "Trio", we learned that children with Down syndrome also have hearts and minds, and the goal is to give a proper understanding of equal rights not only in Mongolia but throughout the world, which generates remarkable results. There is information that the film will soon be demonstrated at the headquarters of UNESCO and the UN...

-"Trio" is translated from English as "three". The role of the protagonist in childhood was played by T. Telmun, a member of the Down Syndrome Association of Mongolia, and in his adulthood was played by actor D. Battumor. This film shows the life of a family with a disabled child living in a rural area. He also tried to raise the issue behind the scenes by saying that there is no place in our country to care for people with disabilities other than Batsumber Nursing Home and Shar Khad Hospital.

Besides the reference to human rights and disability, the film "Trio" is the manifestation of the "essence" of the Mongolian character. It is associated with Chinggis Khaan and Buddhism. The film shows a Buddhist ritual. One of the goals of the film is that religious institutions are not only a tool for the unity of the country, the world, and interpersonal relationships, but also have a positive impact on society by protecting human rights, loving and respecting each other without discrimination, and protecting nature. Thanks to this content, the film has achieved international success and has now won 19 awards from international film festivals in 15 countries on 5 continents.

Last March the film was demonstrated at the United Nations Hall in Geneva. Then, we were advised that if this event is organized in the largest UN office in New York, it will be a stimulus to make a resolution not to use the terms "Mongolism" and "Mongoloid" adopted, as key officials come to understand and support it. Now we will hold a debate in Paris, show the film, and then the film will be demonstrated at the UN headquarters in New York.

-Could you clarify what debate you intend to hold at the UNESCO level in Paris?

-More than a year ago, the Director of UNESCO visited Mongolia and signed a Memorandum of Understanding with the Mongolian government. The Memorandum, signed by the Minister of Foreign Affairs of Mongolia B.Battsetseg, includes the content of cooperating with all scientific and artistic organizations around the world to eliminate abusive usage of the terms "Mongolism" and "Mongoloid" in an incorrect sense that insults the nation, associates it with Down syndrome, and insults people as idiots and retards. The concrete work under this memorandum will be our next debate on November 17 in Paris at the 42nd session UNESCO General Conference. The session is held every two years and lasts more than a month. We will have a debate. In addition to chairing this debate, I cooperate with public and private international organizations and prepare to demonstrate "Trio" to the audience. I am confident of the success of our endeavor.

-What key guests are taking part in the session?

-Many interested guests will be present at the session. For example, UNESCO and the UN High Commissioner for Human Rights on Disability will take part in the event. P. Uuganbayar, Head of the "Mongol Todotgol" NGO, with whom I worked in Geneva, will also take part.

In the film "Trio" Taravlin worked as an adviser on religious matters. The Archbishop is coming with us to Paris to participate in the debate this time. He will share his experience of creating a positive atmosphere in society through film and religion. In addition, consultants from the Down's Syndrome Association and Asia-Pacific Down Syndrome Federation will participate online from London. So this event is not important only for Mongolia. The Asia-Pacific Down Syndrome Federation includes over 30 developed countries including Japan, Australia, India, and China. We are honored to have a consultant from the Asia-Pacific Down Syndrome Federation from London and a UN Special Commissioner participating online with a supportive message on the international platform. I am confident that this will be a vital global activity that will influence official decision-making.

-In December you will hold a debate at the UN headquarters and demonstrate the film "Trio". Holding three major series of debates in one year at the United Nations and UNESCO in Geneva, New York, and Paris is a great achievement...

-International Day of Persons with Disabilities is celebrated on December 3. Human Rights Day is celebrated annually around the world on December 10. On this occasion, we were able to obtain approval to hold our event at the UN Headquarters (in New York) after more than a year of preparation. UN special commissioners, international non-governmental organizations, and human rights activists will take part in the debate. I am preparing well because I will be speaking at the podium of two large international organizations located very close to two continents. I am confident that the outcome of this debate will be the recommendations and conclusions mentioned above.

People with disabilities and intellectual disabilities cannot enjoy their rights, they are abused and discriminated against by people without even knowing it, as a result, they cannot receive health and educational services, and they are unable to protect their human rights. Thus, let's stop racial discrimination, a clear example of which is that the terms "Mongolism" and "Mongoloid" have been misused for almost 200 years to associate people with Down syndrome because of their complexion and skin color. We want to appeal to more than 200 member countries of the UN and UNESCO to formally ban the use of this term.

It is a huge task for NGOs to organize events in Geneva and New York in one year. It implies years of hard work, negotiations, and fundraising. Our NGO is endorsed by many parties politically, technically, and financially. In addition to international organizations, many organizations including the Ministry of Foreign Affairs, the Ministry of Culture, the Ministry of Labour and Social Protection of Mongolia and affiliated agencies, the General Agency for Development of Persons with Disabilities (PWD), Resident Representative Offices to the United Nations and UNESCO in New York and Paris, the United Nations Children's Fund (UNICEF), WHO, the "Trio" team and close friends are cooperating with us.

It is a big responsibility to organize a debate and demonstrate the film in the international arena. If it's about drugs or child abuse, it won't be released. The Mongolian art industry should be proud that the film "Trio" meets all the criteria of the UN and UNESCO and is the first Mongolian film to appear on the world stage. It is a big responsibility that the Down Syndrome Association of Mongolia held a series of major events throughout the year in three cities around the world. I am proud of the reputation of our Association. The Down Syndrome Association of Mongolia is a member of the Down Syndrome Association and is included in the Board of Directors of the Asia-Pacific Down Syndrome Federation.

-Could you briefly introduce the issues raised from the stage of the UN and UNESCO during the one year?

-First, we strive that international organizations make a decision to ban the informal use of the terms "Mongolism" and "Mongoloid" in a negative and incorrect sense. Such a decision will enable Mongolians to file an official complaint and be held accountable if any citizen uses these words incorrectly.

Second, there are many types of intellectual disabilities, such as autism, Down syndrome, and paralysis. Down syndrome is characterized by low IQ. Citizens with other physical, visual, hearing, and supporting disabilities can fight for their rights because they have a healthy mind. However, a person with Down syndrome cannot express himself 100 percent. Therefore, there is a legitimate need for people with intellectual disabilities. Activities at these three meetings are targeted to make this known to the world. It is vital to convey the message that it is necessary to create an accessible infrastructure, feeling their pains and challenges.

Thirdly, through cinematographic art, we are working to raise awareness among people about what Down syndrome is, what to pay attention to, and how to protect human rights. As mentioned above, the film "Trio" has received 19 awards from 15 countries. It was also selected as the opening film of the International Film Festival on Disabilities to be held in Lyon, France in February 2024.

Also, as a citizen, I think that our country’s name Mongolia should be changed to Mongol. When traveling abroad, the word Mongolia is often confused with Angolia. Turkey changed its name from Turkey to Türkiye before COVID-19. Like Türkiye we can change our country’s name.

-Finally, how do you calculate the risk of not being accepted and not getting a clear decision when raising the issue at the UN and UNESCO? What is your next plan?

-We do not deny the occurrence of risks. We will tell the successors to continue the work we have been doing with the same policy and continuity. One advantage is that when organizing a meeting at the level of an international organization, the protocol remains in the archive. So hopefully when the next people come along, the work will be clear and the road map will be ready. If our attempt fails, we hope that the cooperation will continue to share the knowledge and experience we have accumulated so far.

These works are done with a lot of hard work and effort. Perhaps some people may think that it is easy to cooperate with international organizations, or that international organizations are concerned about Mongolia. It is the opposite. We go on our own, take initiatives, get all the relevant permits, overcome all the demands of international countries, and raise our own finances. At the end of the interview, I would like to express my sincere thanks to all the organizations and individuals who have always supported us and cooperated with us.