I'll never forget a friend from high school, who is black, telling me how he hated Black History Month. How all the attention and awareness and concentration on black people just brought on a different kind of racism- a positive per-say division between black and white. Truly we will be a non-racist society when we see achievement and not define what color of skin achieved it. I sometimes wrestle with this same frustration now that I have experienced minority first hand, and question the benefits of awareness. While there are many, it also just further points out differences.
I have a tendency to like to talk, to share what I know and what I learn. Its hard for me not to talk about Down syndrome because I am passionate about my daughter and her future and its a big part of who she is. If I get the slightest sense that someone is looking at Fiona curiously, or attempting to figure out how she can be almost 2 and a half and only be the size that she is, I jump on the chance to talk about mosaic Down syndrome. And as the words are flowing out of my mouth, I realize that the person I am talking to now completely views my daughter differently thanks to the mention of Down syndrome. Whatever they know about Down syndrome, or have experienced with Down syndrome, now in their eyes Fiona is that. And most the time, its not bad stuff they are associating with her. Things like "loving" "happy" or "fun", but awareness also brings classification. She's labeled. The stinking label. Its there for life.
I know that our experiences with this and Fiona are a little different then most parents who have a child with Down syndrome, because, Fiona has mosaic Down syndrome. For us, most people would never know she has Down syndrome unless we say it. They can obviously see she is delayed in growth and delayed in development, but because of her mild physical markers, the ball is in our court to enlighten that she has Down syndrome. She doesn't have those obvious eyes, or a flattened profile that most associate with Down syndrome. And I have been tempted to avoid it, to give Fiona the chance not to be labeled, but its next to impossible for me to keep quiet. One, because its the easiest and quickest way to explain to the look of confusion I get when I mention she is 2. And then two, because I am proud of who my daughter is, Down syndrome included. I am in awe daily with what I learn about Down syndrome and those who have it. How normal their lives are, how typical their needs and wants and dreams are, how amazing their drive and their hearts are. I love being able to show people that, yes, my daughter has Down syndrome, and yes, you were just drooling over how cute she is. That opportunity to let someone feel that Down syndrome is not scary, its not sad, its not pitiful. Its a vibrant, sassy, independent beautiful little girl.
That is what awareness is about. It does point out difference, but in a way that makes us all more understanding and inclusive towards differences. And what it hopefully helps people understand is that Down syndrome does not define my daughter, she defines herself.