Let’s talk about the staged photo op that took place at The Office of Health and Human Services with RFK Jr. on World Down Syndrome Day. Ironically, it is the exact point I was making about sock photos in my previous blog.
I had coffee with a dear friend this past week, and we discussed how the current political climate requires bravery in the face of injustice. I shared my disappointment over seeing so few acts of bravery. This friend told me she thought I was brave for sharing my truth.
So, with that in mind, here I go again.
Let’s talk about how our children are being used as props to make politicians look good.
The post of RFK Jr. posing with families has been shared over 1,000 times. And to my surprise, the majority of the comments on the original post are thanking him.
Thanking him for what, exactly?
Someone spelled “Happy World Down Syndrome Day” on a poster board, he signed it, smiled, and snapped a photo. The entire event probably cost $15 and lasted 30 minutes—if that. And yet, people are treating it like some kind of advocacy win. There is even a video that accompanies it circulating and the parents dared to say, “this administration values the priorities of our community.”.
Meanwhile, back in the land of reality, this is the same man charged with overseeing special education, handed that power by Trump after gutting the Department of Education. Let’s be honest—it likely happened because of his family’s ties to the Special Olympics. That’s the kind of “thoughtful decision-making” behind this.
And I need every single family who is blessed with a child or self-advocating adult with Down syndrome to be absolutely OUTRAGED.
If you’re running on empty—refuel.
We cannot afford to run out of outrage.
Let that fire fuel your advocacy. Let it keep you shouting their worth, their value, and—for the love of everything holy—their civil rights.
Because while people are clapping over posters, this administration has:
- Eliminated the Office of Civil Rights,
- Slashed support through Education cuts,
- Attacked the disability community through Medicaid gutting and unchecked policy changes,
- Eliminated research studies that improve the lives of individuals with Down syndrome,
- And eliminated DEI initiatives that allow people with disabilities employment opportunities and independence.
They’ve handed control of special education to an unelected man who frequently uses the “R” word and evaluates our kids, not by their humanity—but by spreadsheet calculations. And when we push back? We’re called parasites. Meanwhile, the only parasite leaching off the government is him.
Let’s not forget the reason for all these cuts. Why are they doing this? To fund a tax cut for billionaires. Those tax cuts will not help our kids.
I’m gutted that there isn’t more collective outrage about this.
And now, I’m going to say something that may cost me followers—something I’ve hesitated to write because, yes, I’m trying to monetize this blog. We’re facing financially challenging times. But some things are too important to stay quiet about. I am choosing to be brave. I am calling out injustice and corruption.
When Personal Interests Undermine a Movement
The disability rights movement made progress in the past because people put the collective good above their own personal agendas.
Unfortunately, that’s not the world we’re living in anymore.
There are two groups within the disability community that I believe—oversimplified, yes—are enabling harmful policies for their own interests.
1. The “My Religion Is the Only Religion” Advocates
Their priorities?
- Pro-life/anti-abortion activism
- Expanding access to private religious schools—even when those schools aren’t equipped to serve kids with disabilities.
And what are they lobbying for that’s actively hurting us right now?
School Choice policies.
Let me be clear: I sent Sienna to Catholic school. I say this as a Catholic—as a parent who grieved not being able to provide my daughter with the experience I had, and the experience her older sister currently has access to. That environment was all I had ever known, because I come from privilege.
But it didn’t work. Religious schools aren’t held to the same accountability standards. They weren’t required to invest in Sienna, in the ways that truly mattered to our family. And without the law on our side, there was no recourse. They were not interested in the latest curriculum or research. They were not interested in investing more in support services. They were not interested in being flexible, in any way, to the point that they limited her to three hours a day because of her feeding challenges. I offered so many solutions, and they WERE NOT INTERESTED.
The bottom line is this – they did not have to be interested because it isn’t the law. Private schools are not legally obligated to provide an education for students with special needs. They are not obligated to teach them in the Least Restrictive Environment. I convinced myself before kindergarten started that because it was the church, they would do the right thing. I lied to myself, and I had to face that hard truth very quickly that year.
You have every right to make the choices that work for your family. You have every right to prioritize your faith in your child’s education.
But when you expand vouchers and support School Choice under this administration, you are harming the rest of us—especially families who rely on Title I funding and special education protections. You’re widening the gap and undercutting the civil rights of millions of marginalized students.
And let me just say this:
The hipster Jesus I worship wouldn’t stand for that. And if you’re a good Christian, neither should you.
2. The MAHA Families
Their priorities?
- Distrust in the FDA
- Vaccine conspiracy theories
- Personalized “alternative” research agendas
Let’s name it:
There’s something deeply ableist about avoiding a measles vaccine because you fear an autism diagnosis. Autism isn’t a tragedy—it’s a neurodivergent identity that’s existed long before diagnoses or labels. And more diagnoses today don’t mean more autism—they mean better science. Are there environmental concerns that are coming to light because of research? Absolutely, and we should probably expand that research.
I’ve marched beside advocates at the Stand Up for Science Rally. I’ve heard from adult children of undiagnosed autistic parents. Research brought us those stories, those answers, and that understanding. And research has again and again proven there’s no link between vaccines and autism.
If you’re still blaming vaccines, diets, or parenting choices for who your child is—please hear this with love: You don’t need to carry that guilt. But don’t make the rest of us carry your fear.
Because while you’re chasing conspiracy, the systems our kids rely on are crumbling. And your personal crusade is dragging all of us down with you. This isn’t just misguided. It’s selfish.
Leave a Reply