In the last few weeks there have been several news stories that have brought some interesting discussions/debates into the spotlight. And many can be boiled down to a question that goes something like this: “As a society are we better off without people with Down syndrome?” Really, you can feel free to insert the name of any disability – Down syndrome just seems to be the canary in the coal mine for most of these debates.
I have my own questions. And no, I don’t claim to know all the answers (yes, I have opinions.) But I will be brave enough to ask even the hardest questions. I feel the need to stand up and be the voice of the ever-growing minority. The mother in me isn’t capable of just sitting quietly on the sidelines.
What constitutes a good life? Why do I find value in my son’s life when 90% of expectant families don’t? I don’t think it’s a stretch to say that Charlie’s life is good. And last I checked there aren’t any guarantees issued at the birth of children who are born without mental or developmental delays.
How did we reach this point? Have people really dismissed the importance and value of each life (disability or not) in their quest for control and perfection? Today it’s Down syndrome, tomorrow Autism?
I could say that it’s the good ‘ol prenatal testing process that’s gone too far. I’ve argued before that the problem is not the actual tests per-say, but the lack of unbiased and complete information distributed during the testing process.
And why is the “goal” of that process so often glossed over? While the “goal” is never spoken aloud, the statistics provide a much clearer picture. It’s clear that when such an overwhelming number of women decide that a life with a disability is one not worth living, there is something systemic going on. We are close to reaching the day when parents-to-be will be able to test for virtually every conceivable “disadvantage” facing their baby. Ethicists are already scratching their heads about the morality of such a decision when the condition is deafness, blindness, a cleft lip, obesity or a propensity to develop breast cancer or have a heart attack later in life — all of which can be identified in the womb. Today.
At what point do we say enough is enough? Where do we draw the line? And how did we get ourselves into this pickle?
Is it even fair to blame the tests? What about the companies who are constantly researching and developing newer and more accurate tests? (Trust me, they aren’t doing this out of the goodness of their hearts – it’s all about the bottom line baby. There is no actual thought put into the real baby.) But then again companies wouldn’t be putting out such products in the marketplace if there wasn’t a demand. Clearly there is a demand. Are doctors part of the problem? Are they creating the demand to protect themselves from lawsuits? Or does the demand all come back to each individual family making the decision that a baby with a disability isn’t welcome into their home?
I think its safe to assume that choices are made by individuals based on their life experiences. And for example, when our life experience does not include meaningful interaction with people with disabilities, we make decisions in a fear-filled vacuum. We make decisions based on what we think we can “handle” or on myths about disability: “My child will always live at home. My child won’t be valued by society. It will be too hard on my: marriage, other children, etc.” You know – the “what ifs.” There needs to be a real, public dialogue about the realities and myths of raising a child with special needs.
I suppose that has always been one of my main goals with this blog. Yes, it is a “memory keeper,” but it also serves as a platform for a public dialogue by providing glimpses into our life as a family. A family that includes a son with Down syndrome.
And I’ll continue to share and ask tough questions – knowing that the opposition is both strong and vocal. I’m committed to sharing our story – the joys and the challenges. That no, it isn’t always easy or predictable, but then again life with my “perfectly normal” son Henry isn’t either. And guess what? Our family life is filled with some pretty “normal” life activities – vacations, good food, playing in the backyard, spending time with family and friends. And so it is with each funny story, photo, and question asked, I hope to dispel myths others may have about our son, Down syndrome, our family, or our roles as “special needs” parents.
Because this is the good life.