If I find out about a trending social media post, you know it got some traction. This one impacted a lot of the Down syndrome community in not-so-good ways. It happened over a week ago, but I have a few things I want to share with a social media influencer I’ve never met...
It was an ordinary Friday in early June. I took a quick scroll on my socials feed and immediately knew something was going on.
“Oh, what fresh hell is this?” I said to myself as I watched my friends’ Facebook feeds light up. Forgive me if I’ve never heard of you. I even had to ask someone to send me a link to read the post myself.
My blood boiled a little as I read. But I quickly realized I needed to take a beat, resist the urge to react, and let a response bubble up from somewhere different and hopefully more life-giving after I took some time to think about it.
You created quite a stir. And while I initially felt a bit of Schadenfreude at the thought of a social media influencer being bit by the algorithmic hand that feeds them, I also knew that you’re more than the one square inch avatar image on your feed. You and your wife Ashley went through something very scary and sad. I see that. I see you and Ashley having to make a very hard decision with limited information. You are a human being, created and flawed, with agency and intrinsic dignity.
So I took a breath, waited a bit, and want to offer you a few considered thoughts.
First, I’m sorry for the sometimes sharp responses to your post – especially from the Ds community. Straight up, man. We’re tired.
We’re tired of navigating a world that is passive-aggressive and increasingly hostile to our kids. We’re tired of walking into new situations, wondering how our kid will be received. We’re tired of having to undo misinformation that makes it harder for our kids to live their lives.
There’s an old truism that says a lie can travel halfway around the world while the truth is putting on its shoes. It’s true; and guarding against that can make us hyper-vigilant and grumpy. And hyper-vigilant, grumpy people say stuff in a tone we sometimes regret later.
Second, I will add my voice to many others who offered you that you were tragically misinformed. I won’t go line by line with a refutation – after a week of this, we are far past that. I will say that we have gone through scary and frustrating moments with our daughter Julia; but her life is far from “objectively shitty from a health perspective” as you asserted in your original post. Properly managed, Julia is living a very fruitful life – not only for herself, but everyone around her (I’ll get to that in a minute).
Sixteen years ago, Jocelyn and I were where you were: scared spitless, sitting in an interdisciplinary consult with a perinatologist, neonatologist, fetal imaging specialist, geneticist, cardiologist, and a few others. One by one, they read off the scary diagnoses: heart defect, low birth weight, higher chance of stillbirth, speech, physical and cognitive delays.
As the predictions of future challenges piled up, it became irrefutable that our life as a family had diverged from our rosy dreams. But we were thankfully fortified with a steely resolve that Julia would have an aggregate impact for good on the world that would somehow make the adversity worth it. It was a conviction amplified by a host of voices not in the room with us as we faced all of those medical experts. There was ultimately more to Julia’s life than the diagnosis.
At one time or another – especially as we age – we will all experience the tough health seasons that are forced upon us. There are other seasons we bear up with and for others – especially for the ones we love. Both can teach us the contours of resilience and patience; but the latter teaches something that leads us to humanity at its best: the virtue of self-sacrificial kindness. I have found that it isn’t the next technological advancement that moves a society forward.
It’s kindness.
That said, you and Ashley deserved the neither the death threats nor the hateful rhetoric. You made your decision, and I understand in part why you shared it. But I hope one day you will come to better understand the impact of your ill chosen words. It seems in your subsequent posts, you have simultaneously decried the pushback and doubled down on your tone. Taking that posture benefits only you and Zuckerberg.
That, in part, is why you will likely never read this. Amid the comparative mountain of engagement on your feed, I’m sticking a sign on my own little corner of digital real estate to say that feeding this fire and bumping your engagement is ultimately hurting vulnerable people.
Please. Just take a beat, like I did. Let go of your certainty – or at least hold it with an open hand. You’ll be better in ways that you’d never expect.
Third, if you and Ashley had made a different decision, you would’ve had help. Help to process the initial terror and sorrow of unfulfilled expectations. Help to navigate the maddening and convoluted systems of school, medical care and insurance benefits.
When we got the scary news about Julia, encouragers, advisors and new friends came from all directions. We found the most amazing community we’ve ever experienced – and you and Ashley would have found yours. This marvelous crew of adopted family, bound together by occasional adversity and a deep sense of mission, clings together with a bond that five million followers will never deliver on.
Finally, you’ve probably gathered that I’m convinced of the good influence our kids and friends with Ds can have on the world. I haven’t seen enough of your past content to discern your position on how truly bent this world has become; but I believe Julia, her friends, and folks with disabilities in general are a big answer to the madness.
If you were to meet Julia and there was any connection at all, she would remember your name, Ashley’s name, the names of any pets, talk about you over dinner, and treat you like a rockstar the next time she saw you. She walks the halls of her high school, offering greetings and high fives to the friends she’s grown up with – even the ones too self-absorbed to give her the time of day. She always leans in and engages.
Why? Because in the end, she knows better than all of us that it’s not a bump in the Bitcoin market that fuels life; it’s human connection.
I sincerely hope you get a chance to meet Julia someday. My guess is that the chances of that are slim; but I’ll wager you are less than two degrees of connection away from someone that could change your life. Seek them out. They love people – often more than they deserve – and ask only to be loved back. They’ll slow you down and help you rediscover joy. They know right and wrong, but won’t judge you with the venom you’re experiencing right now. They offer a different way.
An Open Letter to Jesse Tyler Ridgway 
It was an ordinary Friday in early June. I took a quick scroll on my socials feed and immediately knew something was going on.
“Oh, what fresh hell is this?” I said to myself as I watched my friends’ Facebook feeds light up. Forgive me if I’ve never heard of you. I even had to ask someone to send me a link to read the post myself.
My blood boiled a little as I read. But I quickly realized I needed to take a beat, resist the urge to react, and let a response bubble up from somewhere different and hopefully more life-giving after I took some time to think about it.
You created quite a stir. And while I initially felt a bit of Schadenfreude at the thought of a social media influencer being bit by the algorithmic hand that feeds them, I also knew that you’re more than the one square inch avatar image on your feed. You and your wife Ashley went through something very scary and sad. I see that. I see you and Ashley having to make a very hard decision with limited information. You are a human being, created and flawed, with agency and intrinsic dignity.
So I took a breath, waited a bit, and want to offer you a few considered thoughts.
First, I’m sorry for the sometimes sharp responses to your post – especially from the Ds community. Straight up, man. We’re tired.
We’re tired of navigating a world that is passive-aggressive and increasingly hostile to our kids. We’re tired of walking into new situations, wondering how our kid will be received. We’re tired of having to undo misinformation that makes it harder for our kids to live their lives.
There’s an old truism that says a lie can travel halfway around the world while the truth is putting on its shoes. It’s true; and guarding against that can make us hyper-vigilant and grumpy. And hyper-vigilant, grumpy people say stuff in a tone we sometimes regret later.
Second, I will add my voice to many others who offered you that you were tragically misinformed. I won’t go line by line with a refutation – after a week of this, we are far past that. I will say that we have gone through scary and frustrating moments with our daughter Julia; but her life is far from “objectively shitty from a health perspective” as you asserted in your original post. Properly managed, Julia is living a very fruitful life – not only for herself, but everyone around her (I’ll get to that in a minute).
Sixteen years ago, Jocelyn and I were where you were: scared spitless, sitting in an interdisciplinary consult with a perinatologist, neonatologist, fetal imaging specialist, geneticist, cardiologist, and a few others. One by one, they read off the scary diagnoses: heart defect, low birth weight, higher chance of stillbirth, speech, physical and cognitive delays.
As the predictions of future challenges piled up, it became irrefutable that our life as a family had diverged from our rosy dreams. But we were thankfully fortified with a steely resolve that Julia would have an aggregate impact for good on the world that would somehow make the adversity worth it. It was a conviction amplified by a host of voices not in the room with us as we faced all of those medical experts. There was ultimately more to Julia’s life than the diagnosis.
At one time or another – especially as we age – we will all experience the tough health seasons that are forced upon us. There are other seasons we bear up with and for others – especially for the ones we love. Both can teach us the contours of resilience and patience; but the latter teaches something that leads us to humanity at its best: the virtue of self-sacrificial kindness. I have found that it isn’t the next technological advancement that moves a society forward.
It’s kindness.
That said, you and Ashley deserved the neither the death threats nor the hateful rhetoric. You made your decision, and I understand in part why you shared it. But I hope one day you will come to better understand the impact of your ill chosen words. It seems in your subsequent posts, you have simultaneously decried the pushback and doubled down on your tone. Taking that posture benefits only you and Zuckerberg.
That, in part, is why you will likely never read this. Amid the comparative mountain of engagement on your feed, I’m sticking a sign on my own little corner of digital real estate to say that feeding this fire and bumping your engagement is ultimately hurting vulnerable people.
Please. Just take a beat, like I did. Let go of your certainty – or at least hold it with an open hand. You’ll be better in ways that you’d never expect.
Third, if you and Ashley had made a different decision, you would’ve had help. Help to process the initial terror and sorrow of unfulfilled expectations. Help to navigate the maddening and convoluted systems of school, medical care and insurance benefits.
When we got the scary news about Julia, encouragers, advisors and new friends came from all directions. We found the most amazing community we’ve ever experienced – and you and Ashley would have found yours. This marvelous crew of adopted family, bound together by occasional adversity and a deep sense of mission, clings together with a bond that five million followers will never deliver on.
Finally, you’ve probably gathered that I’m convinced of the good influence our kids and friends with Ds can have on the world. I haven’t seen enough of your past content to discern your position on how truly bent this world has become; but I believe Julia, her friends, and folks with disabilities in general are a big answer to the madness.
If you were to meet Julia and there was any connection at all, she would remember your name, Ashley’s name, the names of any pets, talk about you over dinner, and treat you like a rockstar the next time she saw you. She walks the halls of her high school, offering greetings and high fives to the friends she’s grown up with – even the ones too self-absorbed to give her the time of day. She always leans in and engages.
Why? Because in the end, she knows better than all of us that it’s not a bump in the Bitcoin market that fuels life; it’s human connection.
I sincerely hope you get a chance to meet Julia someday. My guess is that the chances of that are slim; but I’ll wager you are less than two degrees of connection away from someone that could change your life. Seek them out. They love people – often more than they deserve – and ask only to be loved back. They’ll slow you down and help you rediscover joy. They know right and wrong, but won’t judge you with the venom you’re experiencing right now. They offer a different way.
And it’s a way that humanity desperately needs.