Once upon a time, in a world not politically correct at all, a man called John Langdon Down (1828-1896) discovered what is now called Down Syndrome. Nowadays it would be impossible to even use the same terms referring to someone with Down syndrome that were used by the man who once thought « wait… these people have quite a lot of things in common! ». Here is why.
If today you were to encounter Mr Langdon Down on a dating app, his profile description would be something like this: Born in Cornwall (UK emoji), worked with Dad until I turned 18, qualified in pharmacy and then entered the London Hospital Medical School (doctor emoji). Triple gold medallist (like 12 points at Eurovision but three times). Photograph of "The Ethnic Classification of Idiots" . And under that you would see « workplace: Earlswood Asylum for Idiots in Redhill, Surrey ». So would you swipe right or swipe left?
I am sure many of you would have swiped left because of his workplace but that is literally the real name of the place where Mr Langdon started studying Down syndrome. Back in the days, families were told that it would be too complicated, and expensive, to educate their children with Down syndrome so many of them were sent to residences, where professionals would take care of them. The more I read about it the more absurd it seemed. It is at Earlswood Asylum for Idiots (the name drives me crazy!) that John Langdon Down started examining the palates and tongues of the residents. He started realizing that there were many similarities with people who came from completely different backgrounds and places, and that is when he realized that he had identified a specific group of people with specific characters. But wait! This does not mean he discovered what was the cause of Down syndrome. Nope! Non! Nein!
Now let’s go back to the photo collection… In 1862 and 1865 John Langdon Down photographed about 200 patients and published them in his book « The Ethnic Classification of Idiots ». What confused John Langdon Down was that he could identify many characteristics that were common to people from different ethnic groups: Caucasian, Ethiopian, Malayan, American Indian and Mongolian. He even wrote in « The Ethnic Classification of Idiots » that it was difficult to believe that the specimens compared were not children of the same parents due to their similar physical features, especially referring to the following ethnic group.
Indeed, Langdon Down in his paper draws bigger attention to « the great Mongolian family » which he said had numerous representatives (J. L. H. Down (1866): Observations on an Ethnic Classification of Idiots. In: London Hospital Reports, 3: 1866, 259-262.). Down syndrome was actually referred to as « Mongolian Idiocy » until 1961 (yes, only a few years before going to the moon but lightyears away from being politically correct or accurate. They still didn’t know what was the cause of Down syndrome! ) when 19 international experts including Norman, Langdon Down’s grandson, decided that maybe it would be a good idea to stop calling it like that… (a big round of applause!). They proposed that instead of calling it Mongolian Idiot, it could maybe be called Down syndrome ! It was not until 1965, and with the help of a very understandable request from Mongolia, that the World Health Organization (WHO) adopted the recommendation. It was now official that it would be called Down syndrome!
I still remember though when I was around 15 in France, people in my class would still use the word « mongol » as an insult, referring to people with special needs. It is something I never understood and it was clearly because they had heard it from someone else, maybe their parents. With time people stopped using it but it is still something you can hear every now and then. It is very pejorative, completely inaccurate and it is very important to teach children to not use such insults because you never know who you can be talking to…
It is only in 1959 that a French geneticist named Jérôme Lejeune discovered the extra chromosome that people with Down syndrome have on the 21st chromosome. So, literally nothing John Langdon Down had thought of! However, we have to keep in mind that these were different times and even though now it may seem unthinkable and absurd the use of words such as Mongolian or Idiot, John Langdon Down did help give more humanity to the residents of Earlswood. He added priorities such as teaching the residents how to properly use cutlery, taught them to better control their behaviour, added entertainment and stopped any type of punishment. He also took greater care of children who had wet beds and generally gave the residents useful trainings, treating them in a more human way. Who was once a brilliant medical student at the London Hospital then opened in 1966 his own private residential centre in Normansfield (UK) where he could help people with a wide range of intellectual disabilities.
I was born already surrounded by my sister who has Down syndrome, and I do not know what it is like to not have a sibling with an extra chromosome! It was therefore really interesting to read about the origins of the discovery of Down syndrome and I definitely want to know more, especially about how Jérôme Lejeune discovered the third chromosome. I am glad to see that things have really changed and that now people with Down syndrome have a bit more respect that they clearly deserve… but unfortunately not everywhere. Have a look at our interview with the Uganda Down syndrome Association where Mr Okiro Emadit told us that people in Uganda still call people with Down syndrome « Basiru » (meaning stupid in their local language) because of their slower learning capacity. Some even see it as a curse from God. Therefore we can say that we have gone a long way since John Langdon Down started analyzing similarities between people with Down Sydrome but there still exists many inequalities, even between people with Down syndrome. Together let’s discover more about them and help fight discrimination against people who will surely change your way of seeing life (and who are far from being what people call idiots…)
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