The other day, I was happily reading Curtis Sittenfeld’s new novel Sisterland, when on Page 74, there it was. “It looks like the baby has Down’s (sic). ” Spoiler alert: this doesn’t end well for the baby. I’ve since shoved the book in a drawer, and it is now forever unread. (Note: It pained me to do this. I think Curtis Sittenfeld is a super author, and I’ve previously gobbled up all her books).
In the Memory Keeper’s Daughter by Kim Edwards, the book opens tragically, not because the newborn baby has Down syndrome, but because her physician father abandons her. The tragedy is in the abandonment, not the diagnosis. The book unfolds with a more positive narrative than Sisterland – the baby grows up happy and loved by her adoptive family, while the biological family ends up broken by the secrets in their family.
Canada’s July 2013 issue of Chatelaine magazine features a story about terminating a pregnancy because of Down syndrome, with the odd subtitle: Ending my pregnancy, and saying goodbye to the son I was already in love with, is the hardest thing I’ve ever done. (Again a painful note: I’ve written for Chatelaine before. This one hurt too).
Medical News Today trumpets: “Improved Pregnancy Test Exposes Birth Defect Much Earlier,” referring to Down syndrome as a “fetal abnormality.” In countless media stories, mothers are warned of the “risks” associated with having an advanced maternal age, which inevitably points to Down syndrome.
And on and on it goes – in books, in newspapers, and in real life.
I’m tired of this continuous shovelling of negative – and therefore biased – information about having a baby with Down syndrome (or any child with a disability, come to think of it). Where’s the other side to that story?
My son Aaron is now ten years old, and yes, he happens to have Down syndrome. I’ll not fool you – sometimes life is hard. The trajectory of our entire lives has changed. But that’s not all bad. The hard parts have to do with systems and society – not Aaron himself.
Since Aaron was born, I’ve loved deeper than I ever thought possible. I’ve had my eyes opened to people who are different. I’ve tackled things I never thought I could do – like sit across from a Principal to advocate for my son be educated, and have cameras in my home to speak to the media about injustice and discrimination, and fly thousands of miles away to speak at conferences. Aaron has come with many gifts. He’s taught me to slow down. Life is for living. To only do one thing at a time and to try your very best. And celebrate. Celebrate everything.
I bristle at the memory when he was presented to me by our family physician as “bad news.” The disclosure of a Down syndrome diagnosis, either prenatally or after a baby is born, is merely news. Assigning the word “bad” to the diagnosis also automatically assigns a value-laden attitude, which is transferred onto prospective or new parents. And that’s ethically not fair.
My dream is one day news about Down syndrome is presented in the media, in novels, and by health professionals in the way news about twins is shared. As with any unexpected diagnosis, there is time for adjustment to accept the baby I have, instead the baby I thought I had. But there’s no need to engage in fear mongering about Down syndrome.
Down syndrome has been around for a very long time – perhaps from the beginning of time. Images of people with this chromosomal difference have been identified from the 15th century. Since I’ve been Aaron’s mom, I’ve thought a lot about the meaning of disability. I believe that people with disabilities are a part of the human fabric, just like all other people with differences. In fact, many of us will experience disability ourselves in our lifetime. And the phrase, “we are all one car accident away from a disability,” reminds us we are all vulnerable to unexpected news in our lives.
I had the experience of visiting a family who had just adopted a baby girl with Down syndrome. The baby’s name was Emily. Emily’s mom was beaming when she answered the door. She and her husband were thrilled to have their long-awaited daughter in their arms. We talked about resources and services, but mostly we just basked in the joy of that new little girl. Emily was very much wanted and loved.
Contrast that with the way most biological families receive a diagnosis of Down syndrome. If it is a prenatal diagnosis, physicians can set up automatic appointments for termination, and use terminology like “burden” and “suffering.” After birth, families are often shunted away to rooms at the end of maternity wards. Hospital photographers never show up to take baby photos. Nurses avoid the room and social workers peek in the window. Nobody brings flowers or balloons. Hardly a celebratory welcome to the world for that beautiful new baby. The birth of every single baby deserves to be celebrated, and what health professionals forget is that most of us parents love our children no matter what.
Enough with this doom and gloom. Authors, journalists, editors and health professionals: just because you see having a baby with a disability as a tragic event, don’t transfer your subjective values onto your readers and families. Saying “Congratulations” instead of “I’m sorry” would go a long way to contributing to progressive change in this world. I might have stars in my eyes, but I hope for a world where we all belong, disability or no disability. It is within our own individual power to make this happen.