A few weeks ago, the mother of a child with Down syndrome discovered that photos of her daughter had been stolen. Even worse, these photos had been stolen for the purpose of promoting prenatal genetic testing to detect Down syndrome. In her words:
[My daughter's picture] was stolen again by a Swiss bio-medical company named Genoma. On the front page of their website and a building sized banner in Spain: there's her face, larger than life. My daughter has been made the poster child for a prenatal testing kit called Tranquility. As if she were a cautionary tale: don't let this happen to you.
This mother and daughter's story raises plenty of concerns about the ethical decisions going into advertising campaigns and prenatal testing, but it also raises the question of why any of us willfully provide public access to photographs of our children. Kids with Down syndrome are already more vulnerable than the general population. Why add an additional risk by writing about them, using their names, broadcasting their faces?
When I first considered blogging regularly about our oldest daughter Penny, who has Down syndrome, I had to think long and hard about sharing Penny's image online. Not only does it involve the risk of strangers seeking her out and the possibility of someone stealing her image, but the internet is also full of sites that intentionally mock people with Down syndrome.
In spite of all the risks, I share pictures of and stories about Penny every chance I get. Part of what scared me as a new mother of a baby with Down syndrome nearly a decade ago was the lack of images and stories I could call upon when thinking about our family in the future. I could no longer construct an imagined narrative of our life as a family because I was unable to picture that life, and even more, I was unable to picture it in positive terms.
When Penny was a few months old, someone sent me Common Threads: Celebrating Life with Down Syndrome, by Cynthia S. Kidder and Dr. Brian Skotko. This book compiles stories and photographs about children and adults with Down syndrome living their everyday lives. I spent hours paging through, almost gawking at the faces of the individuals. Until then, I didn't know that people with Down syndrome could be beautiful. More recently, I often suggest that new and expecting parents of children with Down syndrome page through the Lettercase pamphlet, which provides accurate and up-to-date information about Down syndrome in the context of compelling photographs of children and adults living good lives.
When I started my own blog, and when I started writing about Penny for various online and print outlets, I wanted images of her smiling round face to accompany the stories I told about our family. My husband and I agreed it was worth the risk. Seeing our family operating as a family—whether it's Penny with a puzzled look on her face as her little brother wails, or an expression of wonder gazing at lights on a Christmas tree, or just a posed family photo with forced smiles—offers an invitation to imagine a bright future, not only for Penny but also for any child with Down syndrome.
I wish we didn't live in a world where companies stole photographs to promote their genetic testing products. I wish we didn't live in a world where images of people with disabilities are used as a joke. But I am delighted to live in a world—and to help create a world—where my daughter can be accepted for who she is. I am delighted to offer her image as a sign of hope for our future.
Amy Julia is the mom of three kids who love broccoli and hot dogs, and who ask for lollipops every day! Her guilty pleasures are Chardonnay and Diet Coke. She is also the author of Small Talk: Learning from my Children about What Matters Most and A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny. Visit her at amyjuliabecker.com.