My son is a teenager with Down syndrome. And lately, something has been on my mind that doesn’t always have easy answers: the dignity of risk.

If that phrase is new to you, here’s what it means. The dignity of risk is the fundamental right of every person to make their own informed choices and take reasonable chances, even when those choices might not work out. It sounds straightforward. In practice, for families like mine, it’s one of the hardest things to actually live.

We’ve raised both of our kids with the room to choose, to fail, to learn, and to try again. And over the years, leaning into that has been, honestly, terrifying at times. I’ve felt the weight of other people’s judgments as I let my son do things that others seemed to think were beyond him, too risky, not worth it. At times I’ve second-guessed myself. I’ve held my breath.

But here’s what I know to be true:

When we don’t allow for autonomy, when we remove the space to make mistakes and the dignity to make one’s own choices, when we overprotect, we don’t just potentially keep someone safe. We make them small.

People with disabilities have the right to make choices, including ones that don’t work out. That’s not a tragedy. That’s a life. That’s how we all learn.

I’m not saying it’s easy to watch someone you love walk into a wall. But that’s true of anyone we love. When we remove that right from people with disabilities, we’re not protecting them. We’re diminishing them. We’re taking something that isn’t ours to take.

So what does this look like in practice?

For those of us who love and advocate alongside a person with a disability, the work is learning to let go of the outcome. That’s uncomfortable. It requires us to examine where our “protection” is really about our own anxiety, and where it’s actually about their wellbeing. Those are not always the same thing.

And that work doesn’t stay at home. Schools, with their risk-averse cultures, have a troubling tendency to place students with high support needs into boxes, to remove the very experiences that build confidence and capability. There’s also such a relentless push for compliance in many school environments that we forget: we’re supposed to be building self-advocacy skills too. We want young people to be able to say no, to push back, to speak up for themselves. That can’t happen if the only skill we practice is following directions.

As parents and advocates, we have to name this. We have to advocate for goals and experiences that build autonomy.

There’s also something we don’t talk about enough here.

Loneliness. I write about it often because it’s one of the most persistent and damaging outcomes for people with disabilities. And it is directly connected to this conversation. Because when risk is removed on someone’s behalf, what often follows is isolation. Fewer opportunities. Fewer relationships. A smaller world.

The dignity of risk isn’t just about doing hard things. It’s about having the chance to show up, to belong, to be fully seen as someone with agency and capability. That’s not a nice-to-have. That’s the whole point.

If you’re in this with me, as a parent, an educator, an advocate, I’d love to hear how you’re navigating it. Where’s this been hard for you? Where have you seen it go right?

Contact me to continue the conversation.