How Do I Talk About Down Syndrome?
We must sometimes remind ourselves to communicate about children with Down syndrome in a positive and accurate manner. The following suggestions may help in that effort.
Good Words to Use:
Baby/Child/Person with Down syndrome - The emphasis should always be on the person first, not the disability. When we take care to put children first and let the disability remain in the background, we are teaching others where the emphasis needs to be.
Developmentally Delayed - This term is the common reference to describe delays in development such as language, walking, and all other areas of a child's learning process. Most families find it much less offensive than the term mentally retarded.
Has Down syndrome - Someone who has Down syndrome is not a victim of, diseased by, nor do they suffer from or are they afflicted with Down syndrome. They simply have Down syndrome.
Mental Retardation - This term is accurate to describe developmental functioning level but is less acceptable to many parents than the term "developmentally delayed." Use it with caution. A newer, emerging terms is "intellectually delayed."
Typically Developing/Non-Disabled Child - Both of these terms are acceptable and positive ways to refer to people who do not have Down syndrome or another disability.
Poor Word Choices:
A Down(s) - A person with Down syndrome is not the disability. There are many other descriptions that should, and do, define that person. It is dehumanizing and strips people of their dignity to be referred to as a disability. Instead of saying "He is a Down syndrome" or "She is Downs," try "He or she has Down syndrome."
Down syndrome Child/Baby - This terminology focuses first on the disability rather than on the child. This common misstatement causes parents to cringe, at least inwardly.
Normal Kids - Please realize that we perceive our children as being pretty normal kids. Comparing them to normal children implies that a child with Down syndrome is something less than normal.
Retard/Retarded - The best reference is developmentally delayed (for children) and developmentally disabled (for adults).
Mongolism or Mongoloid - As most of us know, this extremely outdated term once referred to people with Down syndrome. This insulting word should never be used when referring to or about someone with Down syndrome.
"They" as in "they are so loving; they smile all the time; they are always happy." - Please don't generalize about people with Down syndrome. "They" are not all alike; nor are people with Down syndrome "eternal children."
"How mild/severe is it?" - A person either has Down syndrome or does not. Down syndrome is not an illness. Having Down syndrome does not mean a person is sick.
"But you're so young!" - Although the chances of a woman having a child with Down syndrome increase significantly over the age of 35, there are far more children with Down syndrome born to younger mothers - they are having more babies.
Handicapped - The proper term would be "has a disability."
Downs or Down's syndrome - There is no "s" or " ‘s" in the name of this syndrome.
Suffers from/Afflicted with Down syndrome - Our children are not suffering or afflicted. We must instill a sense of pride and self-esteem in all children to ensure that we do not make anyone feel that Down syndrome is something terrible to be ashamed about.
(This information is an excerpt from Understanding How Children with Down Syndrome Learn - Proven and Effective Techniques for Parents and Professionals by Susan J. Peoples. c. 2003. Special Offspring Publishing, L.L.C.)
The National Down Syndrome Society also provides some guidance on preferred Down syndrome language. Please click here to leave the Down Syndrome Association of Wisconsin site and go to the National Down Syndrome Society page.