>>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!
Avivah
Thank you for explaining the difference in Downs and Trisomy 21! I have a cousin with Trisomy 21 and our family has always referred to it as “Downs” out of ignorance. I am now slightly more enlightened and a tad less ignorant 🙂
To be honest, I always wondered about that. It always sounded like a bit of subconscious”denial” to me- “No, my kid doesn’t have down syndrome, he has t21!” but now I see that that’s not what was intended. I’m sorry for misjudging you.
Well, Downs sounds a lot better that being called a Mongoloid, which was common when I was growing up! My aunt cared for a little boy with Trisomy 21 for many yrs.
You’re right, mongloid is horrible (coined by Langdon Down, btw) – it was an advance when they moved to Down syndrome.
When I was 37 and pregnant I refused to take the amniotic fluid test. Why? Because the risk of spontaneous miscarriage for mothers that age is equal to the risk of Down’s syndrome (or Trisomy 21…. but they didn’t call it that). I explained to the doctor that I didn’t want to cause the miscarriage of a healthy child when I would not abort a Downs child anyway. I was treated abominably by doctors who even went so far as to ask me why I even went for ultrasound tests or to a doctor at all if I didn’t want medical care…. all because I would not take one test. I eventually calmed them down by saying I would see what the result of the fetal protein test was. When it came out with an even lower chance of Downs than the average for my age, they back-pedalled somewhat.
I know I’m not really on your subject but felt I wanted to share this.
Thank you for sharing, Sue.
I understand what you mean about being treated badly . I had a number of similar experiences this past birth (based on not taking the blood sugar test they wanted, they classified me as not having had any prenatal care at all). Then after Yirmi was born, they all kept asking me why I hadn’t done prenatal testing. I kept pointing out to them that we wouldn’t have made any decision differently had we known.
There’s a lot of room for improvement in how many medical practioners treat the people in their care.
Thank you
I’m one of those T21 bloggers too! Same, same, same. I also find it’s a good indication of the attitude of a medical person. If they talk about T21 they’re usually optimistic. If it’s Down syndrome, it’s labeling and ‘normal’ etc.
Great to have someone likeminded chiming in – welcome!
I struggle with this as a blogger, not because I prefer Down syndrome (I don’t), but that it is the common term and people just don’t search on the internet for Trisomy 21. I completely understand that in order for that to change, I have to change what I say, so I use both.
On a completely unrelated topic, I have just stumbled upon your blog and see that you’re of the Nourishing Traditions mind as well. Our family does the same. Looking forward to reading more!
Welcome! I just spent some time on your blog and will need to browse some more when I have more time – I already am enjoying your content!
I’m a long time NT follower (7 – 8 years) though in the last couple of years since moving overseas have had to shift my standards to accomodate the local foods and availability. I wrote a lot about these topics (sourdough, soaking flour and grains, fermenting, etc) in the earlier years of blogging, so I don’t write much about them nowadays.
We’ve been doing it for the last five, maybe, and it has changed the way I see so many other things as well. I really just get excited when I see other WAPF families, I must always go and say hello. Just like my urge to befriend other mamas with babies who have T21. 🙂
Thank you for the kind words, I’m enjoying your blog as well!