It has been almost 20 years since we entered the world of Down syndrome.  In that 20 years, I have a complied quite a list of phrases, comments, assumptions that I find ridiculous, ignorant, stupid (sorry but sometimes it just is), insulting, and comical. Many times these phrases and the like are not meant to be offensive. Most of the time, they give us an opportunity to educate. Since it is National Down Syndrome Awareness/Acceptance month, I thought I would do a little educating or preaching. You can decide.

Two words I have seen and heard used over and over during this 20 year span are “afflicted” and “suffer.” In my experience, journalists have been repeat offenders.  When this happens, my default is to try to model appropriate, accepted and/or preferred language for the journalist or person using the ill-chosen word. I would have thought that over the course of 20 years, journalists and other professional would have gotten the preferred language memo. The very fact that these words are still regularly used to describe individuals with Down syndrome tells me that there are still people who believe that people with Down syndrome are somehow less valuable, defective, and afflicted.

I can attest to the fact that, in Rachel’s life and her friends with Down syndrome’s lives, nothing could be farther from the truth. I think everyone should have had Rachel’s life. I mean she has had her picture on Times Square like 15 times. She got to go to New York City for the first time at the age of 16 months. I was almost 40 years old and wouldn’t have had that chance if not for her.  She has been back to New York City twice since then. On all three trips, her face made it on the Today Show. Once, Meredith Viera gave her a kiss on the forehead. Al Roker talked to her just before the weather, and Fall Out Boy gave her one of their guitar picks.  She has seen “Mary Poppins,” “Wicked,” and “The Lion King” on Broadway, too. She herself has been in 22 plays.

Oh and how many of you consider yourselves personal friends of your Senators or Representative? Rachel does because she is.  If you don’t believe it, just call them. That’s why she has been able to get them to sign on to important legislation like the ABLE Act.  She has testified at the Kansas State Legislature and she played a part in helping to pass federal and state ABLE legislation. Most people I know can’t say they helped passed a law.

I know some of you dance through life. So does Rachel.  In both her junior and senior years, she attended four proms.  This of course led to our hashtag “justagirldancingherwaythroughhersenioryear.

Rachel just graduated high school. Like her friends, she got a diploma.  She was the volleyball manager, on the honor roll, in National Honor Society, and Thespians. Rachel worked very hard in  school. Academically, she has many challenges. Writing is especially hard for her – both structurally and in formulating cohesive pieces.  She will tell you that she loves school but math is not her favorite. Writing and math are challenging for many people though.

A few times a year, Rachel does speeches for groups. She calls her presentation “I Love My Life.” One of the first things Rachel wants you to know is that she has a great life and that one reason is because she has many friends. She makes friends everywhere she goes. Friends are very important to her.

When we learned through prenatal diagnosis that Rachel had Down syndrome, my then 17-year-old niece said something profound.  When her mom told her that Rachel had Down syndrome, her response was “I don’t know what the big deal is. She’ll have challenges but we all have challenges. Her’s will just be different from ours.”  I have come to realize that truer words have never been spoken.

I often say or write that Rachel brings joy to the journey.  Rachel’s favorite quote is from Cinderella’s mom and says “Have courage and be kind.”  Her favorite Bible verse is Joshua 1:9, “Be strong and courageous because the Lord your God is with you wherever you go.” Rachel frequently reminds friends, family, and sometimes even strangers of this truth.

So does Rachel have challenges? Absolutely. Does Rachel have to work hard? Absolutely. Has she been teased, bullied, or had her feelings hurt? Yes. Has she had her heart-broken? Yes. She also has a great sense of humor, loves deeply, is very kind, polite, and courageous..  All of that is called living.

Afflicted?

Suffering?

Not a chance.

Just to prove it, just a few pictures.