A content creator with a substantial platform recently shared that he and his wife had terminated a pregnancy after a prenatal diagnosis of Trisomy 21, more commonly known as Down syndrome. He accompanied that announcement with a list of medical statistics and concluded, as reported by the LA Times, that Down syndrome “isn’t a blessing” and is “objectively” a terrible thing “from a health perspective.”

He is also quoted as saying he “just didn’t fully understand what Down Syndrome entailed.”

That part, at least, was accurate.

I’m not here to weigh in on anyone’s reproductive decisions. That is a deeply personal matter. What I am here to address is the decision to use his platform to publicly declare a diagnosis “objectively” terrible, presenting a one-sided picture as settled fact, without the lived experience to back it up.

That is a different matter entirely.

Words have weight. Platforms have responsibility.

When you have an audience of that size, what you say shapes what people believe. And what people believe about Down syndrome impacts whether my son gets a job, whether he gets included in his community, whether some people see him as someone worth knowing.

The statistics he cited painted an incomplete picture of what life actually looks like for people with Down syndrome, and for the families who love them. Medical advances, early intervention, inclusive education, and community support have transformed what is possible. Not perfectly. Not everywhere. But profoundly.

None of that made it into his posts or his comments that followed.

What also didn’t make it in: the perspectives of people with Down syndrome themselves. The adults who live full lives. Who work, advocate, fall in love, and contribute to this world in ways that can’t be captured in a list of medical complications.

What I know about Down syndrome.

I have a teenager with Down syndrome. He is funny, at times overly confident, and deeply loved. He competes in athletics, takes classes in general education, cherishes his friendships, and makes people in his community better for knowing him. He also has some of the medical challenges that were listed in those posts. We’ve navigated them. We continue to navigate them.

That is the reality. Both things are true.

I am also not naive. The road has been hard at times. There are systems that were not designed for my son. There are people who have underestimated him. There are days that require more than I thought I had. But at no point have I ever looked at my son and thought: this is a burden on me, my family, or the world.

He is one of the most profound gifts in my life. And I don’t say that performatively. I say it because it is true, and because I have watched it be true for other families.

No diagnosis predicts a life.

A prenatal diagnosis tells you some things. It doesn’t tell you everything. It doesn’t tell you who your child will be, what they’ll love, who will love them, or what they’ll give to this world.

Not a single one of us came into this world with a guarantee of health, happiness, or an uncomplicated path forward. To assume otherwise is a kind of privilege that goes unexamined far too often.

Just this morning, I stumbled across an episode of the Take the Next Step podcast in which Mike Erre, a pastor and father of a son with Down syndrome, described his son as someone who embodies humanity without pretense. He talked about how his son has reshaped everything he thought he knew about success, connection, and what it means to live a meaningful life.

His words reminded me of a pastor I have known for years who once told me that the way we treat people with disabilities is the best measure of how close we are to the heart of Christ. I believe that.

The gap that still exists.

The part of this situation I keep coming back to isn’t one person’s posts. It’s what they revealed.

And what is clear as the news of this Instagram post circulates is that we still have a significant gap in public understanding of what Down syndrome actually is, what people with Down syndrome are capable of, and what their lives actually look like.

That gap is not just an informational problem. It is a values problem.

When people don’t know, they assume. When they assume, they exclude. When they exclude, they deprive themselves and their communities of people who have something irreplaceable to offer.

My son has inspired young people to pursue careers in special education. He has shaped our family’s volunteer efforts in inclusive childcare and community programs. His presence in general education classrooms, on sports teams, in church, and in community spaces throughout his life has changed how his peers see the world. That doesn’t happen if we decide, before he’s born, based on a list of statistics, that his life isn’t worth living.

What I’d ask instead.

Before you speak about a group of people, especially to an audience of this size, listen to them first. Read the research. Seek out the adults with Down syndrome who are living their lives and telling their own stories. Talk to families who have walked this road for more than a few weeks.

And if you find yourself saying you “just didn’t fully understand” something, perhaps wait until you do before declaring it objectively terrible.

The world is a better place because people with Down syndrome are in it. I know it because I have watched it happen, every single day, for 16 years.