Folks, can we cut through the bullshit for a minute. To give you some back story on why this is coming up, let’s just say I’m working on a special project to help update language as it pertains to Down syndrome. I’m all over this project. And do you know what gets my hackles up, what gets me fuming and brooding, the smoke rising? Outdated beliefs and preconceived notions that equate to the lives of people with Down syndrome being worth less. We have come so far as a society in the treatment of persons with Down syndrome, to get to this point. Let’s be honest though, the bar was lower than low. When you start at dumping babies off in institutions with no adequate care or attention, lacking basic requirements like diapers, these babies covered in their own filth, there’s nowhere to go but up! But where have we gotten to? How far have we come? Let me tell you.
People with Down syndrome are valued and loved members of their families. There are people with Down syndrome who get married and have babies; who run businesses and run marathons and become teachers and airline stewardesses. Who star in tv shows, win Olympic medals and get nominated for Oscars. Those who are gainfully employed, writing blogs, public speaking, advocating, and those who would very much like to be gainfully employed. With medical advances and improved health care, people with Down syndrome are living longer, into their sixties and seventies; they are studying and graduating from high school, some pursuing higher education, others whom have been awarded honorary degrees, masters and doctorates. There are individuals with Down syndrome who are helping to run philanthropic organizations, and many who are volunteering their time to make the world a better place. Does this sound like maybe these individuals are contributing citizens? It is time we start treating them as such. It’s time for us to go after outdated ways of delivering a Down syndrome diagnosis and talking about Down syndrome.
I cannot tell you how many parents I have met who told me one of the most upsetting aspects of finding out their child was going to be born with Down syndrome was that those responsible for their care and that of their child repeatedly brought up abortion. Down syndrome is not a reason to abort a child. You don’t want a baby, fine. You screwed up, the condom broke, you were raped, you can’t become a mom, you’re too young, too broke, too heartbroken, too lost. There’s a risk to the mother or medical complications that make the fetus incompatible with life, fine. I am not against a woman’s right to choose what she wants to do with her own body. Sorry, not sorry, I’m just not. There are so many reasons why a woman and her family may want to terminate a pregnancy, but Down syndrome, Down syndrome should not be presented by medical professionals as one of them. The belief that Down syndrome in and of itself is a reason to terminate is a LIE. And we keep perpetuating it, because there aren’t enough voices stopping to say, Hey, that’s not quite right. In a doctor’s office, somewhere right now, a woman is being given a prenatal diagnosis of Down syndrome, and that doctor is going to offer her an abortion. The act of offering is pointed. The option of an abortion is always there; I don’t want to take that right away from anyone. But to suggest abortion, well that’s something, isn’t it? We don’t offer a woman carrying a typical baby an abortion though, so why do so with a woman carrying a fetus with Down syndrome if not to suggest that life is worth less? That is the lie and the bullshit right there. Seriously, think about it for a minute. Imagine you are pregnant, and the doctor asks if you want that taken care of. What the fuck? Now I’m getting angry. The lives of people with Down syndrome are not worth less, and to suggest so by offering an abortion is complete bullshit and it needs to stop.
But what about if the parents feel like they can’t meet the needs of a child with a disability? Listen, I am in a position of absolute privilege, and I know this. From the colour of my skin, to my address to the extra zero at the end of my husband’s salary, I know this and that is why it is even more important that I say something, that I speak out against society’s wrongs. The parents who don’t feel like they can do it, we need to support these families! Adequately, and as a society. In Canada, the structures are loosely in place, but we need to make them more robust, accessible and add stability. And just as important, families need access to balanced information about Down syndrome.
“Injustice anywhere is a threat to justice everywhere,” said Martin Luther King Jr.
I saw this quotation emblazoned on the side of the supreme court building in San Diego, California, and it has stayed with me. Any group being denied its basic human rights and dignity is a threat to everyone’s freedom. If you don’t feel compelled to show compassion toward your fellow human beings, then at least understand that one day it is going to be you or someone you love. We are all dis-abled at some point in our lives. We need each other and we need to hold one another in esteem. Continuing to view people with Down syndrome as less than is a concern that befalls us all. What kind of a society do we want to live in? I know the kind of society I want to live in. It’s one where we all belong, and where we are equally valued from the time we are conceived, until the time we die. There’s a poignant line in Megan Stielstra’s collection of essays on fear; she’s quoting a friend who rephrases able-bodied as “temporarily abled”. We need to acknowledge people with Down syndrome are just like us. They are us. There is no us that does not include everyone. We need to stop offering abortion and pretending we aren’t part of the problem. We need to fundamentally change the way we think about Down syndrome – not as a problem to be fixed, or a medical condition, but as simply another way of being. As an equally valid and valued point on the spectrum of human existence.
I’m tired of the status quo. Tired of fighting against outdated language and angry as hell that people with Down syndrome aren’t being treated better. They deserve better. We all do.