I just read an article that affected me possibly more than anything I’ve ever read before. I’m supposed to be stuffing envelopes full of holiday cards for work right now, but I literally cannot stop thinking about this article and I cannot rid my stomach of the pit it created– so I decided to write. I have to get this out of my head before it eats me alive.
The article was about eugenics. It was about how Denmark has nearly “eradicated” Down syndrome from their population. In 2019, 18 babies were born with Down syndrome in Denmark– 11 of those 18 mothers either declined prenatal testing or did the testing and received a false negative. That means that only SEVEN families chose to continue their pregnancy after learning that their unborn baby likely had Down syndrome. It’s hard for me to find the words about how this makes me feel.
It was a long article… it took me about 25 minutes to read it and I cried for probably 20 of the 25 minutes. It made me feel nauseous. I mean literally nauseous… you know that feeling you have right before you throw up? It felt like that… the entire time I was reading it. In fact, I still feel like that a little bit. I have never had a physical reaction like this to something I read. I don’t know why this one affected me so much, but I can’t get over it.
Why do people choose to abort babies with Down syndrome? The article tried to answer that question, but it left me wanting. One woman who chose to abort her baby said that she felt guilty, but did not regret her decision. She said that she wishes more people who chose to abort would speak up about it so that it did not feel so shameful and taboo. THAT also makes me want to throw up.
Get this– I completely support a woman’s right to choose. I believe that the government should have no say in what a woman chooses to do with her body. I believe that if a woman does not want to continue a pregnancy, she should be allowed to make the choice to end it. I truly believe these things.
But, I believe that a woman should have all the facts before she makes a decision. FACTS… not fear.
I cannot wrap my mind around how a nation prides itself on nearly eradicating Down syndrome. I just can’t.
The article said that many women (or couples) who chose to abort made that decision based on the worst case scenario. In my interpretation, they basically assumed that their baby was going to have every single one of the scary medical issues associated with Down syndrome and that they would never be able to live a “normal” life again. They aborted their baby because they were scared and assumed he/she would be a burden.
I can’t wrap my head around all of this and to be completely honest, I’m probably not thinking super rationally. Sometimes the reality of how many people on this earth view Down syndrome so negatively hits me like a ton of bricks and it takes me a minute to find my bearings.
The United States has somewhere around a 67% abortion rate of babies thought to have Down syndrome. Let that sink in… around 67% of women who are told that their baby will likely be born with Down syndrome choose to terminate their pregnancy.
How did our society get here? Truth be told, I could do some research to learn the answer to that question… but I don’t want to. I don’t want to read about how society justified killing and institutionalizing people with disabilities for decades upon decades. I don’t want to read about how people with disabilities were abused and ignored and treated as sub-human. I don’t want to remember that society hid them away to pretend that they did not exist. I don’t want to remember that babies like mine were thought of as a burden and not worthy of love– and that some still are. I don’t want to read anymore about that because I know that it will only break my heart.
Where is the positivity? Where is the hope? Where is the love? Why are medical professionals STILL starting the diagnosis conversation with “I’m sorry” and “let’s talk about your options.”
Think about how differently an expectant mother would feel if her doctor said “CONGRATULATIONS! You just hit the jackpot with this baby and let me tell you why…”
Why are women STILL told all the things that their child with Down syndrome will not do, even though there are adults with Down syndrome who are proving them wrong every single day?!
Why does anyone assume to know what a person will be like based solely on the number of chromosomes they have?
Sometimes I feel defeated. I feel like I am asking impossible questions over and over again. How will society change? How will the diagnosis conversation be different? How will the termination rate go down? How can I impact this movement?
Sometimes I feel like the work is so hard… the walls are too high… their ways are too set.
This is important work. This is work that I will do forever. This is work that I am so passionate about because I know how misguided our current way is. Change is happening, I know that. I see it happening. I feel it happening. It may be happening slowly, but it is happening. (See? I said that it takes me a minute to find my bearings… but I’m finding them.)
Who will Jade be when she is older? I have no idea. Will she be happy? I hope so. Will she be healthy? I hope so. Will she be a contributing member of society? I hope so. Will she read and write? I assume so. Will she follow her dreams? I sure as hell hope so. Will I support her in achieving those dreams as much as I possibly can? Of course I will.
Ask me those questions about Elyse and Zoe. Guess what? My answers are EXACTLY the same.
So, why the hell would anyone assume that Jade is not worthy of life simply because she has one more chromosome than most of the rest of us? I cannot wrap my mind around it. I just can’t.
It makes me sad and it makes me sick.
And so, I write. And I find my bearings again. And I learn. And I advocate. And I research. And I talk to anyone who will listen. And I do everything I can to show anyone who is willing to be shown that Down syndrome is not scary.
Eradicating Down syndrome is not something to be proud of– it is something to be sad of.
Jade is not a burden, she is a joy.
Let’s all work together to fill the world with a little more joy. Are you with me?
Star-Eyed Girl 
Speaking as the sister of a 20-year-old woman with Down syndrome, if your daughter is surrounded by supportive people, she’s likely to be happy. Statistically, people with Down syndrome are happier than people without it!
Here’s a window into her life, in case it helps you imagine:
Katie loves singing, dancing, playing with dolls, and Netflix. Lately, we’ve gotten into the habit of daily morning walks to stop quarantine sluggishness from getting to us. Her singing voice is extremely loud and less off-key than it used to be. Her math lessons teach her about counting money and buying from stores. Thanks to speech therapy, people understand her much better than they used to. She loves her boyfriend and her friends (although sometimes her friends annoy her). She wants to live with me in the future.
I agree that it’s heartbreaking how much misinformation potential parents get about Down syndrome. If they knew better what life was like, I think more of them would choose to keep the pregnancy. I’m so thankful that my parents made that choice. Life is more fun with my sister.
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I’m not sure how I missed this one! I’m going through my literally thousands of emails and deleting 99% of them – and than I saw this. Your passion comes through so strongly! You are making a difference – even if “the work is so hard… the walls are too high… their ways are too set.” – and you will continue to make a difference for families who are lucky to have a child with Down syndrome. You are also making a difference to people who have no one in their life with Down syndrome – you are educating them and sharing your experience so there will be more compassion in this world. Your circle of influence is large – and growing by the day. Jade is a light is this sometimes dark world. Shine on little girl!
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