“You share too much about your daughter online.”
I know I overshare my daughter, Carly. It’s out of fear.
I share because people stare. As she’s gotten older, it’s become more and more real. She is looked at differently. At checkouts and restaurants. Everywhere in between. When she was younger, I think people didn’t notice as much. They do now.
I share because I want to end the ignorant remarks that she “suffers” from her Down syndrome and that her life isn’t worth living. You can see in every photo her unwavering smile. My child doesn’t suffer, she thrives. She has Down syndrome, but if she’s happy and loved, who is anyone to say she doesn’t have a right to life because she may never be an astrophysicist? What’s the metric here? Where’s the line that puts that life above hers? I think the people who say this are suffering from a lack of education, compassion and respect for their fellow man.
I share to show that my daughter contributes positivity to the world. She contributes pure joy and unconditional love, and I’d rather have her in my corner any day than someone who thumbs their nose at those they deem “less than.”
I share because I’m afraid my daughter will become what society expects of her. Right now, they expect very little, and it’s terrifying. I hear it time and time again. Evaluations, therapies, doctor appointments. “Well, that’s the Down syndrome.” So I share. Based on her evaluations, she can do little. She’s painfully shy, and she clams up around other people. They mistake her shyness for complete incompetence, and it’s used against us. “She doesn’t understand enough for speech therapy.” Meanwhile, here she is at home stringing three signs together and able to use a handful of words at 15 months. She understands.
I share to try to change that perception. People talk about her like she isn’t in the room. She hears. Those words are shaping her. Hearing “She can’t” and “She won’t ever” are the building blocks being laid out for her by professionals. It would be great if instead they said, “She may take a little more time to get the hang of…” or, “These are skills that will require a lot of practice.” I share because we’re already fighting for her right to be seen, to be educated, for her right to be heard, for her right just to be a little girl.
I share Carly with the world because I want the world to see her and challenge her. I assure you, I see the sparkle in her eyes. She will rise to the occasion.
I share because I want people to know her. I am afraid the world won’t see past her diagnosis. I’m afraid people will see her as a label and not a person.
I share because I still hear the word “retard” dropped on the daily. Yeah, I used to say it, too. And then I realized it hurt people, and just like that — I stopped. It’s not funny, and it’s marginalizing an entire group of people. If you can avoid it and use a word that doesn’t hurt, why wouldn’t you? It doesn’t require effort, just a thesaurus.
I share because I want my daughter to grow up in a more caring world. I won’t police the hate, but I will speak up loudly against it. I will counter it with everything I have. And I will continue to share my daughter so that for every one person using the word to bring her down, there are hundreds rallying behind her, lifting her up.
I share because I want people to get a glimpse of what Down syndrome is, and that it’s not scary. If you take the time to get to know my daughter, you’ll be able to look past it.
When I’m sharing her with you, I’m sharing my heart. So please, don’t take it lightly.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to firstname.lastname@example.org. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.