"A Down's Syndrome Boy"

In the audiologist's written report of Matthew's recent Brainstem Auditory Evoked Response (BAER) test, one sentence made me cringe. "Matthew is a 2-year old Down's Syndrome boy." It may not have been written to intentionally offend or hurt but it was certainly a sign of being unaware and uninformed that referring to Matthew in that manner is inaccurate and inappropriate.

I decided to write a letter to the audiologist and enclosed a copy of the language guide written by United Parent Support for Down Syndrome (UPS for DownS).

My Letter to the Audiologist

Dear (Audiologist),

I appreciate that you took the time to talk to my husband and I about our son's sedated BAER test before and after the procedure on July 27, 2010. Thank you for sending us a copy of the results.

As you know, Matthew has Down syndrome. I remembered that you had referred to Matthew as a "Down's kid" when you discussed the results with us after the test. In the written report, the sentence “Matthew is a 2 year old Down’s Syndrome boy” stood out to me. As a parent of a child with Down syndrome, I try to raise awareness and educate people about Down syndrome when I feel it is needed.

I would like to share some information with you about appropriate word choices to use when communicating about individuals with Down syndrome. I hope you find this language guide helpful to you in your profession especially when communicating with parents who have a child with Down syndrome. Using appropriate word choices when referring to Down syndrome will most certainly be appreciated by individuals with Down syndrome and their families.

Thank you for your attention to this matter. Please feel free to share this information with your colleagues. If you have any questions or comments or would like more information, please contact me at (phone number) or (email address).

Language Guide
The United Parent Support for Down Syndrome (UPS for DownS) has a brochure called How Do I Talk About Down Syndrome: A Language Guide. Words can be hurtful and this guide aims to address how to talk about Down syndrome in a positive and appropriate manner. Here are the lists of good words to use and inappropriate words directly out of the brochure. Click on the link above to download a copy of the full brochure.

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 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 is an accurate term to describe developmental functioning level, but is less acceptable to many parents than the term "developmentally delayed". Use it with caution.

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.

Big No-No's:
A Down(s) - A person with Down syndrome is not the disability. There are many things 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" or "She is a Downs", try "He or she has Down syndrome."

Down Syndrome Child/Baby - This goes back to referring to the person first, not the disability.

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 - As most of us know, this is an extremely outdated term that was once used to refer to people with Down syndrome. This 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 they do 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 - Use "has a disability" instead.

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 great sense of pride and self-esteem in all children, so should ensure that we do not make anyone feel that Down syndrome is something terrible or something to be ashamed about.

I realize that there are parents of kids with DS who do not mind some of the terminologies or labels that are considered no-no's. But these no-no's offend and hurt others. Regardless of where one stands on this issue, I think it's best to be informed and use appropriate word choices when talking about Down syndrome to people whom you do not know very well and most especially as a medical professional, a therapist who works with individuals with DS, a media person, or a school teacher.

I may or may not hear back from the audiologist but I feel good knowing that I tried to raise awareness. It's just my little way of advocating for Matthew.

Related post:
Brainstem Auditory Evoked Response