Wednesday, August 11, 2010

"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


Pallavi said...

That was a good job Ria.. I get very angry with the medical professionals when they call our kids "Down's".. And even if you try and tell them they dont get a point.. For them it's one and the same..
Couple of time, my husband has saved me having ugly fights with these professionals..
This is a good idea of sharing the Language Guide..
Thanks for sharing..

Stephanie said...

Good for you for taking the extra step to educate. That phrase would have definitely irritated me also. It's always quite obvious who's up to date in the world of special needs with their language. Unfortunately, many, many medical professionals are not.

A Lady Called Amy said...

Most of Kheaven's team speaks the same way as the audiologist you speak of. I don't understand considering Kheaven is not the first child with Down syndrome that any of them have worked with. I know they aren't trying to offend me, it's just slightly irritating that they're professionals and speaking this way does not seem professional to me. I can't imagine being referred to as "the asthmatic lady" all the time b/c I have asthma, and I don't see how having Down syndrome is different as far as labeling goes. Thanks for sharing this. Someday I may give up my non-confrontational ways and have the confidence to speak up. Hopefully sooner than later!

Looking Up said...

Good for you!

B. McKenzie said...

I hate that terminology. Our pediatrician has used it several times as well as co-workers. I work with audiologists and hear it often. Good for you Ria. I need to start saying these sorts of things or correcting in conversation.

Melissa said...

I have been meaning to send a letter to Claire's cardiologist because he used the same terminology. I love the language guide and will include it too.

Kelly said...

GOOD FOR YOU RIA!! I loved this post. I, like you, ALWAYS try to address these situations when they come up. Whether it be verbal, written, etc. It's important to address these situations from and educational stand point, rather than a heated discussion. I agree, some people are ok with the terminology while others are not. But if we don't educate, the same people that we will encounter in the future will always continue to use the wrong terminology. I would rather not have that eat at me every time I hear it. Educate and move on. I can't tell you how many times people have THANKED me for correcting them. Also saves them from embarrasment in the future. Some people simply do not know!!

Thanks for sharing=)

MaggieMae said...

Kudos Ria for taking a stand. I politely correct every time I hear it and most folks don't take it well no matter how gently I say it. Wish they realized that their words represent their outdated beliefs. Unacceptable, especially in the professional realm. Thanks for always doing your part!

Rochelle said...

Great post Ria and good for you for taking the steps to always educate people in a positive way.

I have always taught "people first" language well before we had Alayna.
Thanks for sharing the resource guide I hadn't seen that yet.

Brandie said...

I am always amazed at how uninformed people can be. When Goldie had her sleep study done last year, the tech asked me "do all your children have Down syndrome?" I laughed and told her no. This was from a pregnant woman working at a pediatric sleep center!! My husband thought a better response would have been "Yes, we all have it."

Austyn said...

Very nicely done, Ria. I love the way you worded the letter and the language guide. As a medical professional, I really appreciate hearing about your perspective and I know it will make me more mindful of my own word choices.

I think that in general, medical professionals do often refer to patients (at least among themselves) by conditions or diseases, simply because it's a way of communicating information that will determine typical/expected management for that category of that patient.

For example: It would not be at all uncommon to describe an individual as "an asthmatic, hypertensive, non-insulin dependent diabetic" in briefing another professional about a clinical situation, rather than "a person with asthma, hypertension, and type II diabetes." However, this usually does not translate into our direct dialogue with patients i.e. "I see you have a history of asthma. How often you need to use your rescue inhaler?"

Likewise, discussion of Down Syndrome should be addressed in a similarly sensitive manner using the language you have suggested. I think that in an effort to keep communications between ourselves succinct and concise, we shorten all of our terminology, and there may be some overflow of our verbal shorthand. This is unfortunate, as it can be offensive, as you have so gracefully pointed out.

Thank you again. It's been a while since I popped into your blog. Always a pleasure ;o)

Kathy said...

Thank you Ria. I know A LOT of people that I will be sharing that information with.