My friends and fellow advocates in the Down syndrome community did an amazing job last week responding to the news stories and fighting back when some on the internet have made absurd comments about our children's worth, comparing the quality of life of an individual with Down syndrome to that of a dog. If you're not engaged with the Ds community on social media, you may have missed some of this, the original stories that aired and the outrage that followed. Fellow mom and advocate Heather Avis, author of The Lucky Few, hit at the core of the issue for me when she said in her recent blog post, "...the movement toward eliminating Down syndrome or the concept that a person can choose to not give birth to a baby solely based on a Down syndrome in-utero diagnosis is rooted in fear and ignorance." She went on to say, "Here’s the thing, the only people who should have a say as to what life is like with Down syndrome are people who have Down syndrome and those of us who are in intimate relationships with them. That’s it. Not the scientists, not the doctors, not the woman who just found out the baby growing in her womb has an extra chromosome."
Like Heather Avis, I believe the root issue is fear and ignorance. The only way we can change that is through education. Some have made this about the morality of abortion, but I believe there are many factors surrounding this issue that fall beyond the realm of the abortion debate. As the President of a Down Syndrome Association that represents many families, I don't engage publicly in debates about abortion. For me, the core of this issue, no matter what country, rests in the reality that some medical professionals give a diagnosis to expectant parents spouting limited, out of date, incorrect data. Not only are they not educating expectant parents appropriately, they're actually making Down syndrome out to be even more complicated than it truly is. As a society we have become accustomed to trusting doctors and medical experts, assuming they must obviously know more than us about something as complex as the human body. If a specialist tells a patient her baby has a 40% chance of dying by age 3, if she knows nothing about Ds, why wouldn't she believe him? There's the concept of a second option when you're trying to decide on a treatment or surgery but most people don't assume a doctor literally doesn't know what he is talking about when he gives you "facts." Many would sue for malpractice if a doctor advised you on a life or death decision using 30 year old data and flat out made up projections.
But this is happening every single day when it comes to Down syndrome. Why aren't we outraged about this?! Why aren't we beating down the doors to every doctor's office? Why aren't we figuring out how to get to doctors when they're still in medial school? Aren't our babies at least worthy of the truth being told about their lives?
Since my experience in 2015, when a specialist explained he told parents the infant mortality rate was 40% for a child with Down syndrome, I have been haunted by the reality that parents are making the decision to terminate their baby with Ds without the whole picture, or worse, with the wrong facts. Since then I've shared even more about my family in hopes that with more awareness will come less ignorance, less fear. What if one of my followers is sitting across from a geneticist next month being told there is a chance their baby will be born with Ds? Will they remember one of my boys and smile through the tears? Will they have a better picture of what life is like loving a child with Ds? Will they be able to make a truly informed decision? That is my hope. That is why I share. That is why I will keep sharing and that is why I will keep reminding the world that my children are worthy.
But what else can I do? What else can we do beyond social media? How do we get in that room, beside that medical professional delivering a Ds diagnosis? What if that diagnosis came with it a list of Instagram accounts to follow? What if that diagnosis came with contact info so one could reach out to a local parent? What if that neonatal specialist or geneticist had been provided with up to date statistics to use in delivering the news? What if that neonatal specialist or geneticist had been trained on how to deliver the diagnosis in a way that educated expectant parents about the possible medical and intellectual challenges, while also sharing with them how individuals with Down Syndrome positively impact a family and our society? What if parents receiving a diagnosis were given a pamphlet on Ruby's Rainbow so they would know individuals with Ds go to college and there are scholarships available to help with the cost?! What if they were given books like Bloom or The Lucky Few? We have struggled with this locally as a Ds Association and it bothers me I haven't done more locally. But the recent news stories have this on everyone's radar now and many of us are left asking what we can do to make a difference. The Down Syndrome Diagnosis Network has amazing resources available. The IG community does a great job of spreading awareness. Moms all over the country want to advocate for the worth of individuals with Down syndrome. How do we bring all of this together? How do we get in that room? How do we spread their worth?
Those are the questions that have kept me up at night since last week. We have an army of women ready to go to battle for the hearts and minds of our society when it comes the value of our children. Let's harness that and become a voice so loud, the medial professionals have no choice but to listen, but more importantly, to LEARN.
I don't have all of the details worked out yet but here is the plan.
- Sign up to be a 3:21Ambassador.
- You will receive digital materials you can personalize as well as pamphlets and handouts in the mail with the best, current data about Ds and info on how to deliver a diagnosis.
- You gather up local info about programs you've found useful or about your local association. You reach out to your local association and see how you can compliment what they're already doing.
You walk in OBGYN offices, the neonatal specialist's office, the geneticist's office with a basket of muffins or cookies and ask to speak with the office manager. You talk to whoever you can and explain you'd like to leave this info to be given out to patients, to be left in the waiting room, to be reviewed by the staff, nurses and doctors. You leave a copy of Bloom. You ask for a meeting with the doctors so you can go over some of the info. You ask if you can do an in-service for the staff so they can learn more about Ds and meet children with Ds. You take your child with you and introduce them when you introduce yourself. You make sure they know they can contact you with any questions and ask them to be sure to give expectant parents your contact info too. You do as much or as little of that as you're comfortable with. And you make it a point to go back and say hello, to check in and see if they need more handouts, or if they're ready for that in-service.
And you go back again, with more cookies, just to say hello and check in. You keep showing up and you keep reminding them individuals with Ds are worthy.
I get this isn't for everyone. I know there are associations and groups out there already doing this. But I also believe the more voices, the louder the message. And there are so many of us who want to do more to teach the world about our babies and share their worth. Let's take all the emotion these recent news stories have stirred up and let's channel it into a lasting impact. Let's keep showing the world with social media that our children are #worthy, let's get on board with the #lifeisbetterwithyou campaign. But let's also get in that room, beside that doctor. Let's rewrite the story that is being told to expectant parents. Let it be our voice they hear. This is our chance to be the good we wish to see in this world! This is our chance to be the change we wish to see in this world!