Thursday, 18 July 2019

I Salute General Charles De Gaulle, a Proud Father of a Child with Down Syndrome



 I Salute General Charles De Gaulle, a Proud Father of a Child with Down Syndrome

In 1866 British physician, John Langdon Down, named Down syndrome. While working as the medical superintendent at the Royal Earlswood Asylum he described the characteristics of people with Down syndrome residng there, as being similar to the people living in Mongolia (he had a series of ethnic race photos he compared them to). He believed people with Down syndrome were a result of ethnic degeneration. The term 'Mongolian idiocy, Mongoloids and Mongolism' became the norm. It wsn't until the 1960s Down's theory of Mongolian origin was discounted. This was after the French Pediatrician/Geneticist Professor Jerome Lejeune discovered that people with Down syndrome had an extra chromosome - three of chromosome #21, and the syndrome was observed across many ethnicities. The term Down syndrome and Trisomy 21 then became the accepted terms. 



During the first half of the twentieth century, the majority of children with Down syndrome were placed in institutions like the one above  – frequently soon after birth. The parents were convinced by doctors that the child was less than human and their needs would be so great, their families would not be able to raise them. The parents were told that the child would be taken good care of. These children were “warehoused” in large state institutions – often in deplorable conditions – locked away so that the rest of society could not see the horror of their lives.

As a parent of a child with Down syndrome, when I read this history, blood boils in my veins, and when I hear stories of parents who bucked the system and stood strong, I rejoice. Today, in 2019, there are still many barriers and prejudices, towards people with Down syndrome. I have battled them and will continue to I am sure. I refer to low expectations, being excluded and segregated, 'she's so amazing' comments when my daughter is doing what other regular children are doing, 'inspirationnal' posts about adults with DS doing ordinary things such as working and so on. 



Thankfully there were parents throughout history who refused to give their children to institutions and chose to raise them as ordinary children and give them ordinary inclusive lives. Let me tell you about one such set of parents, General Charles De Gaulle and his wife Yvonne.



General Charles De Gaulle has been well known throughout modern history as the leader of the Free French Forces. Something less well-known was that his youngest daughter Anne (January 1, 1928 - February 6, 1948) had Down syndrome.

The public perception at the time, was Down syndrome occurred because of the parents' alcoholism, venereal disease or from ethnic degeneration as I talked about above. The De Gaulles rejected these fallacies, and refused to put her in an institution, instead choosing to raise Anne like their other two children at home.

It has been said often that Anne was Charles' favourite child and he called her, 'My joy'. Charles was described as a man who ranged from cocky to stoic by nature, but a loving happy father, who would read stories and sing songs to Anne. It is said that he showed Anne an affection that he rarely showed others, even those in his own household. Anne was raised to feel no less or different than anyone else. (I love this!)

Charles always carried a photo of Anne with him, and in 1962 the photo stopped a bullet from ending his life in an assassination attempt.

In 1948, Anne succumbed to pneumonia, a month after her 20th birthday and died in her father's arms. Upon her death, Charles is said to have remarked 'Maintenant, elle est comme les autres.' ('Now, she is like the others.'). When Charles died, he was buried beside his beautiful daughter.

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I had goosebumps when I first read this story, because I know how hard it would have been for the family to raise Anne with society's prejudices.

Stories like this one inspire and motivate me to continue advocating for people with Down syndrome and to show society that these people are valued, worthy and deserve to have ordinary regular lives like everyone else does. And it is an ordinay regular life, full of love, that I am striving to give my daughter, 'My joy'. Thank you, Charles and Yvonne De Gualles for all that you did for Anne and for future generations.


Jenny Woolsey is an author and speaker on embracing difference, and can be contacted at jenny@jennywoolsey.com or at www.jennywoolsey.com



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