It’s October, which means it’s Breast Cancer Awareness month. It also means it’s Down Syndrome Awareness month. Both causes are close to my heart, because both have touched me. My mom had two types of breast cancer 22 years ago, and thankfully she successfully beat it. But as you can imagine, that increases my risk for developing breast cancer, so it’s definitely something that’s always in the back of my mind when good old mammogram time rolls around. I also just learned of a medical study showing that women who’ve had a biological child with Down syndrome may be at an increased risk for breast cancer. So my risk apparently just went up again—that’s super fun (sigh…).
But even though breast cancer is in the back of my mind, Down syndrome touches me much more profoundly, because it is a part of my life every single day. It is and it isn’t, really. It’s not as if Sam woke up one day with Down syndrome—he had it from the moment of conception, so we’ve never known Sam without Down syndrome, and that fact alone makes it very ordinary for us. But it does still touch our lives every day because we have therapy appointments and Early Intervention and all kinds of fun (okay, not so much…) paperwork to fill out for various things related to Sam, plus we have a two-year-old who is in many ways very much like a one-year-old. And that’s fine and not a problem, but it does mean that every day we’re reminded of Down syndrome in some way—not necessarily a negative way, but some way.
And then along comes Down Syndrome Awareness month and Breast Cancer Awareness month, all rolled into one. Do I wear a blue-and-yellow ribbon for DS, or do I wear a pink ribbon for breast cancer? In reality, I wear neither. But I do a lot of advocacy-type stuff for Down Syndrome Awareness month because it’s so near and dear to my heart—and truth be told, I get a lot of pleasure out of it. I’m doing a couple of social-media photo campaigns features people (mostly kids, but a few adults, too) with Down syndrome, and I truly enjoy working on that every morning. It makes me happy to see these people and read the beautiful things their families say about them. And I like that I’m helping create awareness about Down syndrome. Because pretty much everyone is aware that it exists, and anyone who’s my friend knows that it’s not a bad part of our lives by any means…but there’s a lot more to know than that. I’m one person, and my son is one person. We’re a small piece of the picture, and to truly create awareness about Down syndrome, I think people need to know about more than just one mother and one child—and even that mother and child and their beloved husband/father and son/brother. We’re just one family, and there are so many more.
So I like bringing awareness. But this year, some people in the Down syndrome community are feeling frustrated that the month is called “Awareness” and not “Acceptance.” Because, they say, people are already aware of Down syndrome, and now it’s time to start talking acceptance.
I get that. I really do. I want nothing more than to help create a world where my beautiful son is as accepted as anyone else. But still, something about calling it “Down Syndrome Acceptance” month feels uncomfortable to me. And I’ve been struggling to determine what it is. I think I’ve figured it out, and I hope I can put it into words correctly.
When I think about “acceptance,” I immediately think of a negative connotation. We accept when we get a bad grade on an assignment. We accept when we get passed over for a promotion. We accept that we have no musical talent and a tin ear. We even accept when we get a poor medical diagnosis.
So to me, the word “acceptance” immediately brings to mind something undesirable—something that we have to live with. Perhaps a husband says to his loved one when proposing a life together, “Can you accept that I’ll never make much money and I’ll never be able to buy you that house on the hill?” It’s spoken in the context of goodness—a proposal, love. But there’s still that underlying negative there—accept something undesirable, but love me anyway. And to me, Down syndrome is not something undesirable—it simply is.
I’m not saying we’re all out celebrating Down syndrome as the most awesome thing ever, because it’s not. It comes with challenges. But to ask someone to accept my child feels to me like I’m saying, “I have this child, somewhat damaged, but please accept him.” And I don’t want to say that, because I don’t think it should need to be said. I think there are good people in the world and not-so-good people in the world. The good people will accept Sam without question, and it won’t matter that he has an extra chromosome. And the not-so-good people? Well, I’m not sure me telling them they need to be accepting is really going to do much good.
So please don’t misunderstand me: I value acceptance, and for those in the community preferring to call it Down Syndrome Acceptance month, I have no problem with that. But for me, the term “acceptance” feels unnecessary—as if I’m somehow asking forgiveness for something that doesn’t need to be forgiven because it—because he—was perfectly created as he was.
So for the moment, I’ll stick with Down Syndrome Awareness month. And I’ll keep bombarding my social-media friends with pictures and stories about people who rock this condition. Because I know you already accept them—I just want you to learn a little more about them. Because they’re pretty awesome. 🙂