7 Things A Person WIth Down Syndrome Wished You Knew

Rachel Cherry White and Tony Cherry

* Written by Rachel Cherry White and Tony Cherry


October is Down Syndrome Awareness Month, but I’ve been aware of it for almost my whole life. I’m most aware of it when someone calls it to my attention — like the guy in church who turned around 37 times to stare at my brother, until the last time when I got in his face to catch his eye and raise my eyebrows. C’mon man, even in church? I was aware of it when I came into my mom’s bedroom one day, without knocking, shortly after my brother had been born and my mom was sitting on the bed, crying. The awareness smacks me in the face on Twitter where people use words and make nasty jokes about people with disabilities that they would never say to your face

I’m not aware of it at all when we have Sunday family dinners, or at weddings when I’m doing a running man dance-off with my bro, or when he calls to ask my advice about girl troubles.

My brother Tony had open heart surgery before his first birthday. He has to work harder than me to learn new things. He is a warrior. I tell my kids that his superpower is kindness. So I asked him what he wished people knew about having Down syndrome and here’s his list: 

1.  I never give up. 

People put limitations on my abilities, and that gets me down sometimes, but I will never stop trying to accomplish my goals. I work hard to be the best person I can be.

2.  My dreams are as important as anyone else's.  

I ignore people who say that the things I hope for are never going to happen. 

3.  I want what everyone else wants.

I want a loving relationship and a job that I like to go to every day.  I’m still looking for that perfect person, but I’m the same as everybody else.

4.  I don’t want your pity. 

I do want your respect. Last week when we were bowling, I heard someone making fun of a friend. Sometimes people can be bullies. No one should be talking about others like that, no matter what. People with disabilities have feelings — try to understand them. Put yourself in my shoes.

5.  It’s hard for me to accept my limitations. 

Most people with Down syndrome don’t have children, and this is something I wish was different. I do want to have my own kids, but I know that probably won’t happen.

I’m going to add two more from our family’s perspective:

6.  When you see a new parent of a kid with Down Syndrome, don’t say you’re sorry! 

My mom recalls, voice cracking, ONE person who said, “What a beautiful baby.” So tell the new parent that their baby is precious, cute, adorable, sweet, gorgeous. Comment on their blue eyes or perfect gummy smile. The point is, congratulate them. Let’s celebrate diversity!

7.  Don’t use the word retard. 

I have friends, kind friends, friends who know my brother has Down Syndrome, friends who would never say the N-word or any other word that derogatorily classified an entire group of people to one ugly turn of phrase. But they continue to say retard. I’m not sure why some folks still think it is okay to say it, but it’s not. Don’t stop because it’s not “P.C.;” stop because it’s hurtful, demeaning, and contributes to the dehumanization of people with disabilities. If you really want to keep saying it, take this quiz by Ellen Seidman.  

My brother is the most loving person I know. He calls me every Friday. He asks about what his nieces and nephews want for their birthday so he can get them the perfect gift. He and my dad were the best of buds, and when my dad was diagnosed with a debilitating illness, my brother took care of him — getting him water, helping him to the bathroom, finding something for him to watch on TV. I hope someone takes care of me like that if I ever get sick. 

Photo courtesy of the authors.

When we think about a good life, a life with meaning, we contemplate close relationships. People you love and who love you. Finding joy in every day. 

When I ask my brother if he’s happy, he says simply, “Yes, I am. I have a family who loves each other through thick and thin. I have good friends that make me laugh. I love playing in the Special Olympics, and tae kwon do. I go on long walks every day, and I love my job taking care of dogs.” Maybe we could all use a little more “Down syndrome awareness."


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