Thursday, July 28, 2005

What's in a name...Terminology et al....

This is the year 2005.

Trisomy 21 is the scientific explanation to what the 'syndrome' is.

I personally dislike the term 'Down syndrome' solely for one reason. Dr. Langdon Down was a racist and I want no association to anyone who is a racist, especially if it is used to 'describe' my daughter

""Down syndrome is named after the 19th century English physician J. Langdon Down who described the condition in 1866. As a matter of fact, Langdon Down was not the first person to describe the condition. It was clearly recognized 20 years earlier by the French physician E. Seguin who described the condition in a book he published in 1846 in Paris. Such historical inaccuracies in naming diseases are common. However, there are stronger grounds for not calling this condition after Langdon Down.

In great error, Langdon Down attributed the condition to a "reversion" to the "mongoloid race." He held that evolution had been reversed and there had been a sort of backslide from the superior Caucasian to the inferior Oriental race. Hence, the name Down syndrome smacks of racism.

The disorder was also once called mongolism, a term now considered perjorative, and to be avoided in English. (It is still used in some countries).

Other names that have been used over the years include mongol, mongoloid, mongolian imbecile, mongoloid idiot, mongoloid deformity, Kalmuck idiocy, Tartar, unfinished child, Langdon-Down syndrome, Down's anomaly, and Down's deformity.

All of these names should, in our view, be jettisoned. The least controversial and most appropriate name for this syndrome may simply be what causes it: TRISOMY 21. Source: MedicineNet's Medical Dictionary

Secondly, Dr. J. Langdon Down was not the first person to publish the condition, so there-fore I believe the syndrome should not have been named after him.

I would actually prefer the 'syndrome' [which to tell you the truth, I have no issues with the fact that my daughter has a 'syndrome' she is and her T21, is what it is].....but I personally would prefer it be named after the late French physician Jerome Lejeune who identified the triplication of the 21st chromosome as the cause of the 'syndrome'.

Dr. Jerome Lejeune was an incredible doctor, teacher, researcher, humanitarian, who in the face of ridicule from colleagues, continued to do work regarding Trisomy 21 [especially in the area of Leukemia and T21] and who believed our children had value and were beautiful. If you have not yet read the book about his life and his work you should. It is called 'Life Is a Blessing: A Biography of Jerome Lejeune-Geneticist, Doctor, Father' by Clara LeJeune.

So from where I sit, it isn't a silly 'name game'. Words have impact on everything we do, and if almost 140 years after Dr. Down's derogatory description of the phenotypes of T21 are considered offensive to most, and it has been proven he was NOT the first published physician to describe it, or more importantly to scientifically identify the syndrome [as Lejeune did], we should be accepting of those who chose to identify the syndrome by its simple, accurate medical term: T21.

2 comments:

Heartmom said...

Very interesting! I often have a hard time with the word "retarded" when used to describe handicapped children, such as my daughter.

MitoMom

Tara Marie said...

Thanks for understanding....it is a very harsh word and one that is used too carelessly in our society.