Not Supposed to Understand This Blog… But Here I Am Writing It

This evening I had the honor of speaking at the Georgia Children’s Health Conference. Standing there as my full sassy self, I shared something that’s been true my whole life: healthcare decisions should never be made about us without us.

Before I get into that, let me brag a little. I wouldn’t even be here, walking, talking, and writing this blog, if it weren’t for Babies Can’t Wait. Early intervention literally saved my life. They gave me the foundation to grow, to thrive, and to stand on my own two feet as the woman you see today. That kind of support doesn’t just make a difference, it changes everything.

But even with that strong start, living with a disability comes with assumptions. People often assume we can’t understand medical information,

so our families or doctors should make every choice for us. That we should just quietly accept whatever gets decided on our behalf. Those assumptions don’t just underestimate us, they erase us.

That’s why Supported Decision-Making matters. It’s not about pretending we can or should do everything alone. It’s about building the right support system so we can make informed choices. Think about it: everyone uses support when making healthcare decisions. You Google symptoms. You text a friend. You call a family member. If that’s normal for everyone else, why shouldn’t it be normal for people with disabilities too?

Here’s where it gets personal. I was born with a rare brain malformation called schizencephaly. In simple terms, part of my brain developed with deep clefts or splits. Mine are on the frontal lobe, the part that’s supposed to handle understanding written and spoken language. According to medical textbooks, I’m not supposed to understand much of anything around me.

But spoiler alert, I do. And not just a little. I catch details most people miss. I like to say I prove science wrong daily, and honestly, it’s one of my favorite hobbies. One doctor once leaned back in his chair and said, “Leslie, you’re sharper than half the medical students I teach.” I grinned and told him, “Well, maybe you should let me teach the next class. I’ll definitely bring the sass.” He laughed, but I wasn’t joking. I know my stuff, and I pay attention.

A teddy bear wearing a mask getting its temperature checked

Moments like that remind me how easy it is for people to underestimate someone with a disability. They see the diagnosis. They see the AAC device. They see the differences. What they don’t always see is the awareness, the humor, the perspective, and the lived experience that come with it. And when professionals slow down, speak directly to me, and give me the time to respond, everything changes. That pause isn’t just about medical information. It’s about respect.

Because here’s the truth: without autonomy, healthcare feels like something being done to us. With autonomy, healthcare becomes something we actively shape. Supported Decision-Making gives us the chance to practice independence in real time, build self-advocacy skills, and protect the most basic human right of all: the right to direct our own lives.

This conversation is about more than medical treatment. It is about identity. It is about freedom. It is about control. And yes, there is space for humor too. When a doctor asks whether I am drinking plenty of water, I sometimes want to say, “Does coffee and Coke count?” That moment of honesty reminds us that people with disabilities are whole human beings. We carry flaws, strengths, humor, and determination, and our healthcare must reflect that reality.

As professionals, you have the ability to set the tone. You can choose whether a healthcare interaction is dismissive or empowering. You can choose whether a patient leaves feeling invisible or leaves feeling valued. The difference often comes down to a single decision: whether you listen.

My challenge to you today is this: ensure that every young person with a disability can say with confidence, This is my life. These are my choices. And I have the support I need to make them.