Adults with Cerebral Palsy: Awareness Isn’t Enough
Every March, cerebral palsy gets its moment, complete with green ribbons, awareness posts, and inspirational quotes that somehow always involve mountains, sunsets, or a kid “overcoming” something. Hmm.. but aren’t we missing the adults with cerebral palsy in the room?
And look—I’m not knocking awareness, because it does matter.
However, after 55 years of living with cerebral palsy, I can tell you this with a straight face:
we don’t have an awareness problem—we have an access problem.
And it shows up in ways that are hard to ignore… unless, of course, you’re not the one dealing with it.
Healthcare: So… Where Do Adults With CP Go?
Cerebral palsy is still largely treated like a childhood condition.
Most doctors are pediatric specialists, most clinics are designed for children, and most research continues to focus on early intervention. While that’s incredibly important, it leaves a pretty obvious gap.
Because kids with cerebral palsy grow up.
And when we do, the system often feels like it quietly steps back and says, “Good luck out there.”
As a result, many of us are left piecing together care from providers who may not fully understand how CP evolves over time, including chronic pain, fatigue, mobility changes, and a range of secondary conditions that don’t magically disappear in adulthood.
We don’t need more awareness campaigns—we need continuity of care that actually follows us through life.
And While We’re Here… Let Me Ask This
At 55, I still find myself asking something that apparently qualifies as a “spicy take”:
Why isn’t cerebral palsy more consistently part of the broader brain injury conversation?
After all, it’s literally in the name—cerebral refers to the brain, and palsy reflects a loss or impairment of movement.
Something happened. Something changed. Something didn’t develop the way it should have.
And let me say the quiet part out loud:
People—we quite literally acquired a brain injury at or around birth.
Call it what you want, but placing cerebral palsy into a neat, childhood-only category doesn’t reflect the reality of living with it.
More importantly, classification isn’t just semantics—it directly impacts access.
It influences what gets covered, what gets funded, and which services people qualify for. So when cerebral palsy is siloed into its own category, it often means fewer doors are open to those who need support the most.
I’m not interested in debating labels for the sake of it.
But if expanding how we frame cerebral palsy opens the door to better healthcare, more services, and stronger long-term support, then it’s worth asking why that door still feels closed.
Services: The Cliff Nobody Warns You About
There’s an unspoken expiration date in the disability world, and while it’s not officially documented, it’s very real.
Before 18—or sometimes 21—there’s structure in place, including therapy, programs, and support systems designed to help you succeed.
After that, however, the transition is anything but smooth.
In many cases, services don’t gradually taper off or evolve alongside you. Instead, they disappear almost overnight, leaving individuals and families to figure things out on their own.
That gap can impact everything from employment and independence to mental health and long-term stability.
We spend years preparing kids with disabilities for the future, but we don’t spend nearly enough time asking what kind of future they’re actually stepping into.
Transportation: Welcome to the Future… Kind Of
We’re living in a time of incredible innovation, from electric vehicles and autonomous driving to smart technology that can practically operate a car for you.
And yet, if you’re a wheelchair user, your primary option is still a modified minivan.
In a world that’s racing toward the future, accessible vehicle design feels stuck in the past.
Recently, my son asked me a simple question that stuck with me:
“If accessibility wasn’t an issue, what would you be driving?”
My answer came without hesitation—a Rivian R1S.
Not because it’s flashy, but because it represents where the industry is heading.
The problem is that this future still isn’t being built with accessibility in mind. Instead of designing inclusively from the start, we’re continuing to retrofit solutions after the fact.
Accessible transportation isn’t a luxury—it’s essential. It’s how people get to work, support their families, and stay connected to their communities.
Right now, that access is limited, and in many ways, outdated.
So What Now?
This isn’t about placing blame—it’s about moving the conversation forward.
We need healthcare systems that support adults with cerebral palsy, services that extend beyond childhood, and innovation that includes accessibility from the very beginning.
Because awareness without action doesn’t create change—it just creates noise.
Final Thought (No Inspiration Music, I Promise)
I’m not writing this as a motivational speech.
I’m writing this as a husband, a father, a professional, and someone who has spent a lifetime navigating systems that were never fully built with me in mind.
Cerebral palsy awareness month is a great starting point.
But if we stop there, we’re missing the point.
Because the real goal isn’t awareness—it’s building a world that actually works for all of us.
Let’s Keep the Conversation Going
I know I’m not the only one thinking about this.
If this resonated with you—or even if you see it differently—I’d genuinely like to hear your perspective.
You can reply directly to this email, or click “Contact” in the upper right corner of the website and send me a note.
Because the more we talk about this, the harder it becomes to ignore.
