>>Why do you use the term Trisomy 21 rather than Down syndrome? Do people even get it?<<
The decision to use the term Trisomy 21 on my blog was initially based an intuitive feeling rather than well thought out reasoning. This in part was probably because this was the term used on the sites and blogs of those whose approach towards their child with T21 I had an affinity towards. These parents are all proactive, believe in the inherent intelligence and capability of our children, and are dedicated to doing whatever they can to help their children overcome the various challenges that come along with T21.
But the decision to continue using this term was based on history and my feelings about that. In 1866 Dr. J. Landon Down identified a number of characteristics that this group of people often share, and the syndrome he noted was named after him; hence Down syndrome. The physical symptoms he noted were accurate, but his ideas about what led to this condition were not. He attributed the condition to a ‘reversion’ to the ‘mongoloid race’ and that the evolutionary process had reversed itself and these people represented a backsliding from the superior Caucasians to Orientals, at that time viewed as inferior. This was a racist perspective that was reflective of the times during which he lived but is not at all in line with our beliefs nor our knowledge today. Interestingly, after his death one of his own grandchildren was born with Down syndrome – it makes one wonder how different the conclusions he might have come to would have been had he been alive at the time of his grandchild’s birth.
For close to a century those with Down syndrome were institutionalized, ignored and considered unworthy of existence. (Well, unfortunately this last one is still very true today, which is reflected in the 90% abortion rate of babies with T21.) These children do have unique challenges in various aspects of their development that need to be mediated in order for them to maximize their potential. However, being institutionalized at birth and ignored for their entire upbringing except for the most basic of physical care wasn’t conducive to overcoming their inborn challenges, and not surprisingly, these severely neglected children grew up very underdeveloped cognitively and physically. (I say not surprisingly since all children raised in institutions and ignored for throughout the course of their lives grow up with severe delays.) Unfortunately, the impression most people have about people with Trisomy 21 is too often based on the Down syndrome stereotype that we are moving past in our generation.
What caused the condition that was originally termed Down syndrome has been shown to be not at all related to morals (as assumed by Langdon Down) but to genetics, when a baby is born with three copies of the 21st chromosome rather than two. Trisomy 21 is a term that accurately describes the medical reality. When you hear the term Down syndrome, that too frequently conjures up a negative picture, and it is this picture that terrifies parents when prenatally they are told their baby is at risk for T21 or after birth it is confirmed. This picture is being redefined as our children now receive the care they have always deserved but have been denied for so many years. Today’s children with T21 will be accomplishing things currently assumed to be impossible or at best unlikely, and I look forward to seeing significant advances in the accomplishments and integration of individuals with Trisomy 21.
Yirmiyahu is part of this growing group of amazing individuals with T21 who have a bright future and on this blog this will continue to be the term that I use!