HOW TO TALK ABOUT - DOWN SYNDROME
The following is an article written by Stephanie Mamayson for the Canadian Down syndrome Society. This article describes the correct "Language and Terminology".
The correct spelling is Down syndrome. There is no apostrophe “s” (Down). The reason is because in English, adding an apostrophe indicates ownership is involved. Dr. John Langdon Down provided the first formal description of the syndrome, but he did not have Down syndrome and thus no possessive is used. Also, the “s” in syndrome is not capitalized. Other countries may continue to use “Down’s.”
Use person-first language. Individuals with Down syndrome are people first. The emphasis should be on the individual, not the disability. For example; a baby/child/adult with Down syndrome, not “Down syndrome” child or “Downs baby.”
Down syndrome is a chromosomal arrangement that is present at conception. The term “birth defect” is not correct.
Down syndrome includes developmental disability. People with Down syndrome usually have mild to moderate intellectual delay. The term mental retardation is considered outdated in Canada and should be avoided. The term mongoloid is considered extremely inappropriate.
Avoid generalizing people with Down syndrome as “always loving”, “always smiling”, or “perpetually happy.” People with Down syndrome are not all alike. The diversity of abilities and characteristics among individuals with Down syndrome can be best described as the same for the general population.
Avoid judgmental terminology. A person with Down syndrome is not “suffering from,” “a victim of” or “afflicted with” Down syndrome. Down syndrome is not a disease and these references only diminish a person’s dignity. Suggestions include “living with Down syndrome” or “has a medical condition known as Down syndrome.
People with Down syndrome have the same rights as everyone else and should be treated with respect.
PUTTING IT INTO PERSPECTIVE
People are people first and not their syndromes, diseases or medical concerns. No person would wish to be called or described as a "Down syndrome baby, Down syndrome boy/girl, Down's child or Down's person/adult". Instead, they are a person WITH Down syndrome or who happens to have Down syndrome. If you yourself had a syndrome, illness or disorder, you would most likely or probably prefer that people not refer to you as the "Cancer person" for example. Language first is very important. It's easy to forget this when we are talking about a collective of people who just happen to have a label which often can have negative connotations.
A Parent's Perspective - written by Sandi
Again, I feel that is important to add the personal perspective regarding this topic. From a mother's perspective and also a personal one, there are some additional points which I believe are a must to add to this section. The most important area that I feel where an impact and gain has been made with respect to Down syndrome is, the cessation in using some old out of date terminology - Mental Retardation. The wording originally was used in medical literature many years ago, and back then had no negative connotations and was not considered offensive. Today, this is not the case. The term, while still in use, has been recently been removed from all medical texts, medical literature and government documents. In fact, the term became negative when in the last 20 years "Retard" which originally meant: "1. to slow up especially by preventing or hindering advance or accomplishment", or "2. to delay academic progress by failure to promote". (Sited in the Webster Dictionary) as it's first known usage was from the year 1788 when the noun was first recorded. More recently however, has a much different meaning(s) which are primarily: 1. "Often Offensive" or negatively implying a person is developmentally delayed. The origins are described here, "The noun is recorded from 1788 in the sense "retardation, delay;" from 1970 in offensive meaning "retardedperson," originally American English, with accent on first syllable" - cited from Dictionary.com (see below for further references). So it is important to understand the reason why many families find the term altogether completely negative and offensive, and also why we prefer some adjusted language which more accurately and appropriately describes (or talks about) the correct concern. There are many new and acceptable terminologies which are now used today instead of the old negative ones. Here are a few of the ones we use today: Developmental Delay (which talks about the delay with physical development in general), Cognitive or Intellectual Delay (which talks about the delay with the mental development), or Global Delay (which refers to a general and sometimes unexplained delay that covers many or all delays).
References used for "Retard/Retarded":
American Psychological Association (APA):
retard. (n.d.). Online Etymology Dictionary. Retrieved July 30, 2010, from Dictionary.com website: http://dictionary.reference.com/browse/retard
Chicago Manual Style (CMS):
retard. Dictionary.com. Online Etymology Dictionary. Douglas Harper, Historian. http://dictionary.reference.com/browse/retard (accessed: July 30, 2010).
Modern Language Association (MLA):
"retard." Online Etymology Dictionary. Douglas Harper, Historian. 30 Jul. 2010. http://dictionary.reference.com/browse/retard>.
Institute of Electrical and Electronics Engineers (IEEE):
Dictionary.com, "retard," in Online Etymology Dictionary. Source location: Douglas Harper, Historian. http://dictionary.reference.com/browse/retard. Available: http://dictionary.reference.com. Accessed: July 30, 2010.