Not a Glitch

My obligatory response to a YouTuber's choice

I have been putting off writing this, but I know I need to. (I even already finished my Meme Drop for next week, both for this Substack and my other one, purely out of procrastination.) I usually avoid the news as much as possible (you should, too—it’s purposely designed to depress and divide us), but this story has completely taken over all my social media feeds. And as a member of the Down Syndrome community, I cannot be silent. I’m not going to include any links to any of this person’s videos or even any stories about it, so if you want to chase this rabbit yourself, be my guest. I’m not going to offer full, direct quotes or specifics because I don’t want to give it my effort or energy. I don’t want to give this guy the clicks and views. Everything I know about this story is from social media posts, which I’ve been completely inundated with. It’s been impossible to avoid, and I find it both heartbreaking and infuriating.

I do ask that you please read all the way to the end, even if you disagree with any of the points that I make. Thank you.

Last week, famous YouTuber Jesse Ridgway and his wife (I think her name is Ashley, I’m not going to look it up) made an announcement about their pregnancy, which they’d already been chronicling for their audience. They reported that they had decided to terminate her pregnancy (which was somewhere around 20 or 21 weeks along) after learning that their son had Down Syndrome. He said a lot of stuff, and I’m not going to get into much of it, but it reeked with the stench of someone thinking they know what they’re talking about even though they really, really don’t. He made statements about not wanting their child to have a “shitty life” and referred to him as a “glitch” and said they’d try again for better (or something like that).

First off? How insulting to anyone with Down Syndrome. To their families and those who love them. To the people who choose them every day, with zero regrets.

This is heartbreaking for so, so many reasons. Personally, I am very much Pro-Life to begin with. You may disagree with me on that, that’s fine (lucky for you, your mother didn’t). I’m not gonna hate anyone for disagreeing with me. In other places around the world, terminating Down Syndrome pregnancies is much more common, as high as 100% in some countries. Even in the States, it seems that as soon as a diagnosis is made, medical staff often recommend it immediately, some even aggressively pushing it. (Thankfully this was not the case for me. I was asked if I wanted to continue my pregnancy, I said absolutely, and it was never brought up again.) Understand that this is disability discrimination. What should be happening is doctors giving parents a better representation of what life with a magical child with Down Syndrome is actually like, rather than outdated stats and scare tactics. I seriously doubt that the Ridgways were given proper information about how these kids can easily receive the medical care they need (assuming they even need it) and go on to live fulfilling, happy lives. How there are so many programs out there to help families adjust, build connections, and plan for the future. Medical staff members who neglect to properly inform these parents are a huge part of the problem. The blood of these innocent children is on their hands.

Here’s what I’d like to know. Did the Ridgways even talk to someone with Down Syndrome? Have they ever met someone like their son? Did they reach out to other Down Syndrome parents to see what their life could potentially be like? If they had, I bet they wouldn’t have made the decision they did. Instead, they used their large platform to promote false information and disability discrimination, negating decades worth of work the Down Syndrome community has put in in attempt to shift the narrative toward acceptance.

The news media is at fault here too, because as far as I’ve seen, they’re only telling the Ridgway family’s side of things. Have any of them talked to Down Syndrome families about how this story is affecting them? About how they’ve already had to be battling discrimination on an almost daily basis, then some ignorant famous person comes along and makes things worse? Have they talked to an actual person with Down Syndrome? Because, after all, they are actual humans with thoughts and feelings just like the rest of us, despite all the dehumanizing going on. Again, I’m only learning about all this from social media, and everything I’ve seen is from fellow content creators, not major news outlets (so admittedly, I could be wrong, there might be outlets doing a decent job). Anyway, I screenshot the following graphic from another Down Syndrome parent:

If you’ve never seen Disney’s Wreck It Ralph, you should. I consider it an underrated gem. One of the characters, Vanellope, is a racecar driver in a video game, ostracized by the other racers for the way her image flickers and seems to glitch. She’s seen as a freak and kicked out of her own game. **Mild spoiler alert** It actually turns out that her “glitch” is an extra boost of power, and she can use it to outrace them all like a boss. When I heard that Ridgway had used the term “glitch,” I immediately thought of Vanellope, and noticed how she is similar to kids with Down Syndrome—what seems like a disability is actually so much more! These kids have super powers that cannot be explained. Their capacity for love and joy is incomprehensible. They have incomparable magnetism. And they don’t have terrible lives, nor do they make others’ lives terrible. The world could use MORE people like them. My Betsy is happy and delightful, she’s a bright light to everyone who meets her, and she’s made our lives better. She’s made me better. I wouldn’t change her for anything.

And that’s what makes this so sad. This story makes me feel all kinds of things, but what I ultimately land on is pity. Not for the aborted son, but for his parents who have no idea what they’ve given up. That extra chromosome might come with a little extra difficulty, but it also packs extra love, joy, laughter, cuteness, wonder, strength, kindness, heart, beauty, silliness, and sooo much more. The Ridgways cheated themselves (and the rest of the world) out of something beyond wonderful, and they don’t even know it. They’ll never know it, and that adds an extra layer of heartbreak. If they had continued the pregnancy, they could have been such great agents for change. Their millions of viewers would have seen this sweet boy growing up and been influenced to see Down Syndrome in a positive way. What a waste, on so many levels!

My hope and prayer is that this can be turned around for good somehow. That all of us, saying what needs to be said, advocating for our children and those to come, can bring about change. The U.S. already has a lower termination rate for Down Syndrome babies than most of the world, so at least there’s that. I want the world to see that these children deserve to be born, that they’re not a problem, an inconvenience, a glitch, or a burden. They’re “imperfectly perfect,” as I like to say, they are beautiful and worthy, and they have so much to teach us.

To any parents receiving a Down Syndrome diagnosis for their unborn child—I beg you, please allow your baby to live. Even if you don’t feel equipped to handle a child with a disability, there are sooo many people out there who actively want to raise children like yours—there are waiting lists of people who want to adopt kids with Down Syndrome. You have created a lovely tiny human who deserves to live and be loved, and I promise you they can have that chance with someone, even if you don’t feel you can do it yourself. OR you may find that you are much stronger than you thought, that raising such a special child enriches your life and makes you better. Just let them live, please. You won’t regret it.

I also think you should check out this song by Rachael Lampa, Superpowers, which I have mentioned in previous posts. It is a beautiful ode to her son Leo, who has Down Syndrome, and it has been stuck in my head a lot with all this going on (and I’m not mad about it being stuck).

I thank you for reading this, and I hope you’ll subscribe if you haven’t already. You could upgrade to paid if you want, and know you’re doing something extra awesome for a busy Mom. I also have some songs you can check out (several of them are about Betsy!) and a small YouTube channel which is mostly videos of Betsy along with some of my music. I’ve also got a little merch shop you can check out, too! I appreciate every ounce of support, and I send you my love and gratitude. Don’t be afraid to be a little extra!

This song is about Betsy! We wrote it for her when she was sick (and I was overwhelmed):