On this day, March 21st, known as Down Syndrome Awareness Day (3/21 = 3 copies of the 21st chromosome…get it?), social media is lighting up with awareness campaigns and blog posts, mismatched socks (still trying to figure that one out myself), and baby photos. For those who don’t know much about Down syndrome, awareness days create great opportunities to learn. And for those of us within the Down syndrome community, these days are opportunities to tell our stories and hopefully enlighten those around us to the shared humanity of people with disabilities.
When I first joined the Down syndrome community upon the birth of my daughter nearly 12 years ago, I discovered that—at least on the surface—I was a bit of an anomaly, meaning there seemed to be certain similarities among other members of the “Down syndrome club,” that I did not share, other than being a parent of a child with an extra copy of the 21st chromosome.
Perhaps the biggest dissimilarity is that I am an atheist. The majority of parents in the Down syndrome community practice some sort of religion, and their faith occupies a very large space in their lives. In the beginning, I couldn’t understand where they were coming from, the words they said, the platitudes of comfort they issued to one another. Religion is an intrinsic and interwoven commonality among them, a strong fiber that holds them together, provides comfort and explanation, and strangely even justification for this new world into which they’ve been thrown. It gives them a certain peace of mind when they hear those fateful words uttered by their doctor, your baby has Down syndrome…
Religious parents often believe that God is behind everything; He is all-knowing and it’s all part of His plan…God has done this. He has overseen the mutation of the genetic makeup, that primordial soup that begets life, the triplication of the 21st chromosome. God alone has seen fit to saddle this fragile, innocent new life with heart defects, weak lungs, speech impairments, intellectual disability, thyroid conditions, low muscle tone, sleep apnea…and the list goes on. And somehow their faith in this benevolent being who has—for some unknown reason—decided to wreak havoc on their unborn child helps to get them through. And makes me shake my head.
They also love to say, in talking about Down syndrome, “God is testing me,” followed by that perennial classic, “because God only gives us what we can handle.”
Why should my child’s health and well-being be part of some sort of grand plan to test my ability to handle adversity? I test myself as a parent, as a person who can make informed decisions in child rearing, who can oversee therapy and medical appointments, education and a fulfilling future, who can love, who can be the best parent I can be, and raise the best child I can raise. To imply that my child—who has a disability—is a pawn in a game to see what I’m made of is blatantly ridiculous and offensive. Should I then also live with the guilt that my child has to work so much harder for everything because I am so arrogant to think this is all one big test of my ability to be a good person and pave the path to heaven? If I were to fail, to be a terrible parent, to be someone who can’t deal with the reality of my child’s diagnosis, what happens then? And what about my daughter’s autonomous life and her lessons? Did she do something in utero to deserve her genetic mutation? Is God testing her?
Obviously—and is common in many disability communities—I couldn’t turn to many of the parents in the Down syndrome community for support. I had to find my own way to cope with the news, without the false comfort of religion. Which actually wasn’t all that difficult, to be honest. Between myself and her father, we were just thrilled to finally have a baby girl, and we knew we would be excellent parents to her regardless. We don’t believe we were given custody of this life by some god because we are any stronger or more capable than anyone else. (Conversely, would such a religious plan mean that someone who has only typically-developing children were given them because that’s all their god thought they could handle?) We just believe that what’s inside of us is what drives us—and that is our love for our daughter. To say that some other entity or being or force is in control of our lives is a cop out, a recipe for hypocrisy when things don’t go as planned.
Another common phrase about children with Down syndrome that bugs me is “Our children are angels.” What does that even mean? This is most commonly stated by people outside the Down syndrome community who must feel that this is something kind to say, something a parent wants to hear. They are also usually those people who are under the mistaken impression that people with Down syndrome are always happy, always sweet, forever innocent children who do no wrong. Try telling that to my kid who has no qualms about telling bold-faced lies to get what she wants! My child is her own person, with her own personality, quirks, humor, and mistakes. She’s also an amazing, bright, funny, beautiful little human, and she will always be the absolute light of my life. Stereotyping an entire population of human beings as eternally innocent angels is incredibly detrimental and dehumanizing especially when—even in this enlightened age—they still have to fight for civil and human rights.
I love my daughter more than anything, and am always excited to share her with the world. Her diagnosis is nothing more than a genetic anomaly, something to be worked around. It isn’t a blessing, a curse, or a test. I want people to know the person she is, to know that Down syndrome is just a part of her, not the sum of her.
I certainly don’t condemn people for the ways in which they choose to cope with Down syndrome or any childhood diagnosis. But I do feel that holding someone else responsible for the paths our lives take cheapens the value of our strengths, our abilities to love and nurture, and our accountability. Such a world view threatens our own humanity by allowing a mere idea, a myth, to pull the strings.
Today and all days, I celebrate my daughter for all that she is, and that includes being a child with an extra chromosome. I applaud myself and her father and all the people we have brought into her life who have helped her become who she is. And I am proud of the faith we continue to have in ourselves. It’s what got us where we are, and what will keep moving us forward.