Hooray for World Down Syndrome Day
March 21st was World Down Syndrome Day, and I was so impressed by the reasoning behind it when I found out. March is the 3rd month of the year, and 21 represents the twenty-first chromosome that has three copies instead of the usual two, which is what causes Down Syndrome. The day was established in 2012.
Our Story
My late brother had Down Syndrome, so advocacy for individuals with the diagnosis is near and dear to my heart. Down Syndrome can cause intellectual disabilities and medical problems. However, that is not what I want to focus on in this post. I want to focus on what this community can do, and how they are people who love deeply, joke around, and make mistakes like any other person.
There was a running joke in my household. When my brother was born, the doctor said my brother wouldn’t talk much and wouldn’t be able to do a lot. He was a very active boy who absolutely LOVED to talk. He had dreams and aspirations like anyone else. Unfortunately, he was often talked down to or put into a box because of his Down Syndrome. He dreamed of directing movies and loved to talk about them. It was sometimes to the point of nauseam, but we loved him anyway. I had to often tell him to stop talking about it so we could get on with things like making dinner and doing his homework, but he would not be deterred! When he was able to get a job through a job coach program, his coach set him up cleaning hotel rooms. It’s important work, but then he got into trouble talking to the guests! They obviously didn’t take the time to get to know my brother, because if you spent more than 5 minutes with him, you quickly realized he should not have a job that didn’t involve talking to people. But they assumed that cleaning rooms was all he could handle, so that’s what they set him up with.
Put in a Box
People with Down Syndrome face a lot of stereotypes. They are constantly put into a category. I would often just stare at people and ask what they meant when they said “people like him,” referring to my brother, mainly because I liked to watch them squirm with discomfort as they realized how rude they were being. But it also honestly didn’t make sense to me. My brother was so much more than his condition. He was creative, intuitive, had a kind soul, and a big heart. I also met a lot of other people with Down Syndrome who had their own wonderful qualities. But they were also very different from each other. To me, it was as if someone said, “you know, people like you, like young women with brown hair.” It just didn’t make any sense.
Same, Different
My brother did learn at a different rate than I did. He tended to take longer to learn things, but that didn’t mean he didn’t learn them. About the only thing we finally ad to admit he wasn’t going to be able to learn was how to drive a car. He took driver’s education in high school, and they even purchased a golf cart for him! However, he just didn’t have the reaction time needed for driving. But other than that, he really was capable of anything! He graduated with a regular diploma from high school, he took college courses, and had a job for a while. He even did an internship at Disney World! He also did a few presentations talking about his experience. He was a part of a dance troupe for people with disabilities, and took dance classes all through grade school. We were both in acting camp growing up, and he had a couple of roles that involved learning lines and getting into different characters. I had many lively and intellectual conversations with him. They tended to go off-topic, especially since he loved to talk about movies, but they were always interesting and he was a very social guy.
A Takeaway
I taught my brother a lot, but I think if I was to look at the big picture, he taught me about the most important things in life. He always forgave immediately, and always looked for the good in everyone. It drove me nuts all the time, but it is a wonderful quality to have. He also looked at life as a party; he never stopped playing. He loved to have fun. He also couldn’t care less about what people thought of him. He didn’t care that he was way too old to go trick-or-treating around the neighborhood, he did it because he liked doing it and didn’t mind what other people thought about it.
Never assume someone can’t do something because they have Down Syndrome. The best thing is to assume they can, and help modify it as needed from there. For more information about ending stereotypes and how to get involved, click here. To find out more information about Down Syndrome from people who have it, click here!
Author: Jenni Chute, MA, MT-BC
Editor: Sonya Imperio, MT-BC
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