A letter from the editor: Down Syndrome Awareness

October is many things for many people. Breast Cancer Awareness, Halloween, homecoming. For me though, it’s something some people may not think about, or ever even experience. 

It’s Down Syndrome Awareness Month. 

If you don’t know, and many of you probably don’t, my little brother has Down syndrome. Down syndrome is a genetic, chromosomal condition classified by the presence of a full or partial extra copy of chromosome 21. Down syndrome is also known as trisomy 21, and it’s very common, occurring in one in every 700 babies.  

There are different types of Down syndrome, but educating you on science isn’t my point. 

Advocacy for individuals with disabilities, particularly those with Down syndrome, has always been a passion. Most importantly, people need to know and understand that people with disabilities are just that – people.  

Treating them as such is so incredibly crucial.  

My brother has always been and forever will be just my little brother. Growing up, I never treated him differently. He got dressed up in tutus, he got locked in closets, we wrestled and fought and everything else “normal” siblings do. I never understood why people wanted to treat him differently, because to me, he was just my brother. He was no special anomaly.  

As I got older, however, I admit I began to resent the special attention he got. There were certainly times I felt like I was living in my brother’s shadow. I was young and naive, and let my emotions cloud my judgement. I think all siblings of people with disabilities have felt it at some point. It’s hard, honestly. You love them, so you feel guilty for your resentment, but feeling invisible is a tough sentiment to overcome.  

I did overcome it, though, and I’m forever grateful I did. I realized at some point that being an advocate for my brother’s independence was more powerful than pouting over his innate need for help.  

He is a person, and he is my brother. If he needs help, it’s my job as his sister to help him, and it’s also my job as his advocate to teach him how to do those things so next time he doesn’t need help –and it works. His independence has grown exponentially since I stopped being selfish.  

Of course, I also learned to grow into my own confidence, and I shine in my own ways, independent of him. This is also important to break down those negative feelings.  

If you’ve met John Henry, you know he’s a charmer. And a ladies’ man. And you’re gonna love him. But I am always terrified people will hate him and hurt him. That’s what comes with being a caregiver.  

Bad people exist; bullies exist. People who may mean well and don’t do well exist too. The world has changed a lot, and many people have become widely accepting of individuals with Down syndrome and other disabilities, but some people just don’t go about it in the right way.  

One of the best books I’ve ever read was “The Man Who Loved Clowns,” by June Rae Wood. If you haven’t read it, make plans to, especially if you need to experience the perspective of the sibling of a person with a disability. In my opinion, everyone should read it. It really opens your eyes to what the experience is like, even if it’s a little medically outdated and a bit dramatized.  

My point is, you have to understand that people with disabilities like Down syndrome are people. My brother is not a child, in fact, he’s an adult. Don’t treat him like a child. You wouldn’t want to be treated like a child; don’t treat people with disabilities like children.  

Don’t try to force your help on them either. I promise you, most of them don’t want your help. If I even attempt to help my brother do something he doesn’t want me to help with he gets so mad at me.  

Use people-first language, please. As if I haven’t said it a million times already in this article, people with disabilities are people. You wouldn’t say “a lupus girl,” so don’t say “a Down syndrome girl.” And don’t you ever let me catch you using the R-word, because we will have more than words if I do.  

 I could go on a lot longer about how much I love my brother and want to make the world a better place for people with disabilities, but for now, I’m going to leave you to think. Have your actions been consistent with treating people with disabilities like people, or have you just been treating them the way you think you should treat a person with a disability?  

If you have questions about Down syndrome, need someone to talk to about having a family member with a disability or just want to talk about advocacy, please email me at kclark201608@troy.edu.