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Finding A New Label for Down Syndrome
Recently I enjoyed a discussion about finding a better name for the condition of Down syndrome. Some prefer to use 'Trisomy 21' because the negative connotation of the word down, even though the syndrome is named after the British physician who first described individuals who had the syndrome.
I suggest a name change to 'Lejeune Anomaly' because it reflects a more accurate diagnosis and a more enlightened vision of the diversity among people with Down syndrome. Dr. Jérôme Lejeune discovered the genetic anomaly of the third copy of chromosome 21 in 1959; a copy of their own chromosome, not one that they share with anyone else who has Down syndrome.
When my son was a baby, I read an article about one of Dr. Lejeune's laboratory assistants, a young man with DS, who would show those touring the lab that the third copy of chromosome 21 in the slide under the microscope was like his own.
British physician John Langdon Down reflected the perspective and prejudices of 1866, although he did champion care and opportunities for the children he described with what we have long considered a perjorative term.
Some years ago I requested my son's permission to use his first name in messages on the down-syn discussion group, and he agreed that I could use it if I also wrote what belt level in Tae Kwon Do he had earned. Eventually I decided to refer to him only as 'my son' because it seemed inappropriate to bring Tae Kwon Do into serious or tender responses to other parents or in my own stories about him. Over the years I have come to think the same way about 'Down syndrome.'
I have to admit that I have never liked the word 'special' and was a bit stuck on removing that from common usage or at least my own vocabulary. I wanted him to have an excellent education in an outstanding classroom with amazing teachers and ordinary accommodations.
It also bothers me that professionals and advocates do not use People First language, including those who say "he *is* Down syndrome." One of my pet peeves was that people would refer to my son and others with disabilities as "special needs children."
I wrote to the editor of the Special Needs Children website here at Bellaonline.com a few years ago asking that they change the name of that webpage to "Childhood Disabilities" or at least "Children with Special Needs" only to learn that the editor that named the site had resigned. And because so many families, professionals and advocates used that phrase to search for information and support, the name was not changed. I was invited and volunteered to take over the editor position.
A year or two later, an article I wrote, "Thoughts from the Middle of the Night" was included in the book, 'Chicken Soup for the Soul: Children with Special Needs.' So, I believe the universe is laughing at my effort to reduce the use of the word 'special' and even my strong disinclination toward use of non-people first language.
I think this has freed me from fretting as much about smaller but not inconsequential language issues. I have been thankful that the internet has given us as a community better opportunities to combat derogatory language that people with developmental disabilities and their families find intolerable, and will never step away from protesting their use and advocating for greater awareness of the effects of insensitive, disrespecful, or bullying remarks and hate language.
This year, the name of this web page was formally changed to Children with Special Needs. Although this might seem like a small thing to some, it has made a great difference to me. The change reflects a great effort and hours of work by those who manage such things at Bellaonline, who may never fully understand the significance of the change but responded to promote inclusion, respect and support for our community within our greater community.
Although I hope to provide information, resources and support for families of children whose diagnoses reflect the true diversity of people worldwide, I became an advocate due to my son being born with Trisomy 21 and developing Type One Diabetes when he was 7 years old. Through him I have met wonderful families raising children with developmental disabilities, chronic health conditions, and other challenges. I can be followed at Twitter at twitter.com/downsynadvocacy because that is the diagnosis that brought me into the advocacy community.
From my son's earliest days I have believed that the opposite of Down syndrome should have been the term used by the medical community to replace earlier labels. He and others with DS always seem to lift up our quality of life and richness of experience. Every year that passes with my son I believe more strongly that this website should have been named Especially Needed Children. We are so fortunate to have them in the world. If you can find an alternate label, I'd be down with that.
Browse at your public library, local bookstore or online retailer for books for new parents, like Babies with Down Syndrome: A New Parents' Guide or Down Syndrome: An Introduction for Parents and Carers.
Content copyright © 2013 by Pamela Wilson. All rights reserved.
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