The Other R-Word

About a month ago, I was talking to my sister and was trying to remember the three types of Down syndrome. It was still on my mind when I went to bed a little while later, so I decided to look it up before I went to sleep.

I came across a website called Healthline that had the information I was looking for (Trisomy 21, translocation, and mosaicism). I ended up skimming through the article which had the typical general information about Down syndrome, especially highlighting the delays and difficulties that can accompany the extra chromosome. It doesn’t really faze me to read those things anymore, but then I read this in the Screening section:

“Some women choose not to undergo these tests because of the risk of miscarriage. They’d rather risk having a child with Down syndrome than lose the pregnancy.”

That fazed me.

Medically speaking, when I think of risk, I think of life-threatening conditions. Down syndrome is not life-threatening. It’s life-enhancing. If you talk to almost anyone who has a personal connection to a person with Down syndrome, the only “risk” that is involved is that you may experience more love and joy than you ever thought possible. If you talk to a person with Down syndrome, they likely are not going to refer to their life as “risky”. A baby with Down syndrome is not a risk. It’s a baby. And like any baby, it can soften the hardest of hearts, bring a smile to the most lonely or unhappy, and has unlimited potential to achieve amazing things.

So after reading those two sentences, I scrolled to the bottom of the page and found a Contact link. When I clicked on that, it took me to a page where I could report an inaccuracy. So I did:

To Whom It May Concern:

While reading your information about Down syndrome (https://www.healthline.com/health/down-syndrome#outlook), I came across the following statement in the Screening section:
“Some women choose not to undergo these tests because of the risk of miscarriage. They’d rather risk having a child with Down syndrome than lose the pregnancy.”
Stating that the woman would rather “‘risk’ having a child with Down syndrome” is inaccurate. It is also extremely offensive. It should simply state “They’d rather have a child with Down syndrome than lose the pregnancy.” If you insist on using the word “risk”, it should be to say “They’d rather have a child with Down syndrome than risk losing the pregnancy.”
Thank you for your attention to this inaccuracy. If the medical professional reviewing this statement has any questions, please contact me at your convenience.


Sincerely,
Jenny Moyers

Guess what?! It worked!!!!!!!! I am so excited so share that when I checked that same link and section last night, a month later, that second sentence has been changed! It now states:

“They’d rather have a child with Down syndrome than lose the pregnancy.”

After relishing in my victory for a couple of minutes, I looked back at the entire article and I noticed that ‘risk’ seemed to be used a lot. That made me wonder exactly how many times it was used. So in true researcher fashion, I copied and pasted the article into Google docs and hit good ol’ CTRL + H to find how many times ‘risk’ needed to be replaced.

10

Ten times that R-word meaning things like “a situation involving exposure to danger”; “the possibility that something unpleasant or unwelcome will happen”; “a person or thing regarded as a threat or likely source of danger” was used to provide information about Down syndrome.

You may be thinking, “Ten really isn’t that big of a number. Don’t be so sensitive, Jenny.” Well just for you, I decided to look up a few other birth defects or disabilities a baby could be born with to see if ‘risk’ was used as often in those articles. Using my same highly scientific “Cut & Paste, Find & Replace” research method, this is what I found:

  • Birth defects (overall) – 14
  • Cystic fibrosis – 5
  • Congenital heart disease – 4
  • Cerebral palsy – 3
  • Spina bifida – 1

The word ‘risk’ is used twice as much in reference to Down syndrome than four other common disabilities that can occur in babies. And that’s with one of the ‘risk’ references taken out. (Go me!)

In the United States, approximately 67% of fetuses determined to have Down syndrome are aborted each year, and there are some researchers that believe that percentage could be higher. That percentage is significantly higher in other countries such as the United Kingdom, Iceland, and Denmark. Some people will point out the population size of the different countries, as though that’s an excuse to kill a fetus that will likely develop into a baby with Down syndrome.

But when such a bleak picture is painted by medical professionals and literature by using a word like ‘risk’ that indicates that the fetus poses a danger or a threat, while I’m devastated by those numbers, I can’t say I’m surprised by them. Yes, I absolutely support a woman choosing to do genetic testing to learn if her baby will likely have a genetic condition such as Down syndrome. Some of us like to have a feeling of being prepared to meet the different needs our new baby might have (as if you can ever truly be prepared). The word ‘risk’, however, elicits feelings and images of doom and gloom, unpleasantness, maybe even danger. (Insert eye-roll at the thought of Moses being dangerous. Unless cuteness is dangerous, then he totally is.)

A person that hasn’t had the experience of having a child or a loved one with Down syndrome or other disability may not understand why this seemingly little word is such a big deal. If that’s the case for you, let me ask you if you would refer to a baby with a disability or birth defect as a retard? Gimp? Freak?

No?

Why not?

Oh, because those words are offensive?

Then let’s stop associating an unborn baby with Down syndrome with risk. It’s not a risk. It’s a baby. A baby that deserves the chance to grow up to be its own unique and wonderful person.

Please, if you know someone in the medical profession, encourage them to consider the power of their words. It can literally change, or maybe even save, a life.

And thank you, Healthline, for taking this seriously and making that change. Hopefully we can talk soon about those other 10 usages…

2 thoughts on “The Other R-Word

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