Why I Don’t Need You to Like My Daughters With Down Syndrome
I’m going to try to be brief and to the point. This is not a post by a medical professional or an expert; this is simply a post by a mom. I am a new mother, though our daughters are our fifth and sixth children, and they are both 6 years old. We adopted our girls in March of 2015 from China, and they both have Down syndrome.
This is the essence of what I am about to say: The way I just described our daughters runs the risk of defining them. I run the risk of the description of how they came to be part of our family, of the extra chromosome they have, of their Chinese heritage, of the fact that they are girls, in some way defining our daughters. However, amongst all of these descriptions, I have noticed one stands above the rest as a target for defining personhood: Down syndrome. Many people understand defining a person by gender, race or whether or not they were adopted is inappropriate. Assumptions are made, but they are considered racist, bigoted or sexist.
Why is it typically seen as socially acceptable to define a person by Down syndrome?
The majority of people I meet who find out our daughters have Down syndrome respond by sharing positive experiences of individuals they know with Down syndrome. This is a good thing. Positive thinking is happening in our culture, due in large part to progressively inclusive trends in our schools and society. But the goal is not for my daughters to win homecoming queen someday or get a date to the prom. My concern is not that my daughters with Down syndrome are liked. My concern is that my daughters are known.
My concern is that people who have Down syndrome are recognized as individuals, not based solely upon the fact that they have an extra chromosome. My concern is that the majority of people, though they may have met and interacted with a person who has Down syndrome, have never truly known anyone with this syndrome, because the person with Down syndrome is marginalized before the relationship even begins.
I love my daughters. I do not love or like my daughters more or better because they have Down syndrome. My daughters are very different from one another. I sometimes like my daughters and sometimes I don’t like my daughters, just like sometimes I like all of my children and sometimes I don’t particularly like all of my children. They have good days and bad days. They have good moods and bad moods. They get sassy and disobedient and grumpy. They are not always happy.
Happiness is perhaps the trait to which people refer most when I mention Down syndrome.
Happiness is complex. Happiness is a choice. Happiness is, in my opinion, primarily the ability to live in the tension of the unknown — of our understanding and our expectations, of good and bad, of right and wrong. The happiest people I know do not live in the world of stark contrast. In this way, I would say the observation that our daughters tend to appear happy is true. But please, be careful to understand. They are not always happy.
We can talk and debate diversity and inclusion forever, but true inclusion doesn’t occur until we are intentional about relationships.
You need not like my daughters. You need not find them cute or funny or charming because they have Down syndrome. You need not like them because they have a syndrome any more than you need to like them because they are female. They are human.
They deserve to be known. They are more complex than you might think. Take the time to get to know them. Respect them. Appreciate them for the unique individuals they are. Then, after you know them, feel free to like or dislike my daughters. (You’re probably going to like them a lot.)
Follow this journey on Excuse Our Mess.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit A Story page for more about our submission guidelines.
Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!