A Children’s Hospital, at 31

Aging out of a condition that doesn’t age out

Growing old with cerebral palsy is weird. Growing old is weird, period.

But what’s especially weird is being a fully grown adult (well, at 4’11”, some might argue that I’ve never fully grown) and still having to go to a pediatric hospital for specialized cerebral palsy care. To be honest, I’ve resisted getting such specific care for this very reason. As a woman with a physical disability — and being Asian adds a whole other layer to it — I’m too used to getting infantilized. So, why in the world would I subject myself to going to a children’s hospital for general health care?

Well, having written about cerebral palsy for several years, I started to feel somewhat of a fraud not seeking out the very resources and practices I was writing about. Plus, after losing private insurance when my Pinterest contract ended, I figured out that Medicaid was more likely to approve prior authorizations and claims if they were directly related to my disability. And some physicians literally brushed me off to cerebral palsy clinics, claiming they can’t care for my condition — something that I never experienced with private insurance I had through school or work.

Aging with cerebral palsy has been something constant on my mind ever since I stopped having a 9-to-5. I think a part of me was ignoring, or even neglecting, that part of my identity. My form of cerebral palsy is impossible to hide or camouflage — something that no one with any kind of disability should feel like they need to do, but that’s unfortunately the society we live in. Whether I open my mouth or move a muscle, it’s pretty darn apparent that I have a disability. So, in order to prove I was more than my CP, I’d do everything possible to “outperform” my disabled body and convince folks, including myself, that I had so much more to offer.

It turns out that not having school or work be your “clutch” — not to mention having so much time on your hands and being the most isolated you’ve been in your life — forces you to raw-dog life (do people still use that term? Well, whatever, because I’m using it here). These two-and-a-half years have been an overdue journey to facing my cerebral palsy and how it looks as I’m inevitably getting older. At the back of my mind, I always knew that premature aging is something I’d need to deal with. I undoubtedly use 3-4x more energy and effort than the average person to do basically anything. Starting in my mid-twenties, I’ve noticed doctors using the words “arthritis” and “spondylosis” much more often than before.

But I thought I had more time before I truly had to face it. Nothing like the job market forcing a “retirement” you didn’t choose — hopefully a temporary one — to make you face your darkest, scariest fears. I totally understand those people who refuse to retire. An external purpose, however capitalistic it might’ve been, keeps the aches and pains ignorable. Without one, they’re visceral, and they’re loud.

Not that long ago, it took me six months to realize my back was broken. I actually found out accidentally during an ER trip for stomach issues; it turned out I just had a nasty stomach bug, but the doctor waited until I was on my way out to mention — to my husband and me — that I had a transverse back fracture I should probably get checked out. I immediately knew where it was from. Months prior, I had fallen off my mobility scooter on high impact after hitting an inconveniently placed speed bump in front of a sidewalk curb cut. I was in a lot of pain immediately after, but muscle relaxers and wine did the trick, so I thought. But it was soon after that ER visit that the back pain came back to bite me. My suspicion is that all the throwing up from the stomach bug made me “pull out my back” somehow.

The most ironic part? That scene of the crime (the inaccessible curb cut) was right in front of the very hospital I went to for the ER visit. And I’m happy to report that the stupid speed bumps have since been removed.

In contrast, when I hurt my rib this past June, I immediately knew I broke it. I’d like to say that’s because I’ve gotten to know my body better in recent years. But it might be because my body is just tired of the bullshit I had put it through in my teens and twenties. Maybe it’s a little bit of both.

Anyway.

I’ve become so engrossed with this concept of aging with cerebral palsy that I even published a medical journal commentary about it: ”Navigating the healthcare system as an adult with cerebral palsy: A call for change” in the Developmental Medicine & Child Neurology journal in 2024 (the print version came out in 2025). If you’re familiar with CP, you know that it’s considered a pediatric condition since it occurs before, during, or shortly after birth. Most CP research and resources focus on early intervention and childhood care. The rationale is that kids’ brains have the most neuroplasticity, so if anything is going to change the course of how a person with CP develops, it’ll occur in childhood.

Newsflash: kids with CP become adults with CP. The condition doesn’t magically disappear when you turn 18 or 26. Obviously. But looking at how the current healthcare system is set up, it seems like medical folks didn’t get the memo.

Luckily, there are people who are trying to change that, including researchers at the University of Michigan’s Department of Physical Medicine & Rehabilitation. I recently participated in their autoethnographic study on adults with cerebral palsy, which aimed to collect qualitative data from stakeholders to examine our quality of life across the lifespan.

I felt like participating in it was my moment to shine, since my life has recently been revolving all around it. I mentioned in my first Substack post that I’d share my responses, lightly expanded from my session responses.

Without further ado, here they are:

Looking across your life — including from adolescence to adulthood — how has your health changed?

My mobility has changed, but not in the direction people assume when they hear “cerebral palsy” and “getting older” in the same sentence. The expected story is narrowing: less range, more equipment, more dependence. Mine has run the other way.

The clearest measure is the equipment itself. In adolescence, I used a Permobil power chair—heavier, bulkier, harder to separate myself from—and now I use a 35-pound Pride Mobility scooter. As my devices have gotten lighter and less obstructive, my world widened instead of shrinking. Less chair between me and the room. Less distance between wanting to go somewhere and going.

The change shows up in small, ordinary acts more than dramatic ones. I can pick up my own chair and load it into the back of an Uber (if the driver doesn’t drive off from me at the sight of it). But when things go as planned, I don’t have to build a day around accessible transit, wait on someone else’s arms, or decide in advance whether a place is reachable at all. The chair has become something I move, rather than something that decides whether I can move.

So the honest arc from adolescence to now bends toward freedom: more spontaneity, more independence, a shorter gap between intention and motion. The function that matters most to me hasn’t declined. It’s expanded, and the equipment is a large part of why.

What moments or transitions felt most important in shaping your current health and well-being?

The most important transitions weren’t clinical. None of them happened in a doctor’s office. They were about independence and information, and the two proved inseparable.

Attending Barnard and Columbia was the first. Leaving home forced a kind of independence I hadn’t had to practice before: the daily logistics that suddenly became mine, not a guardian’s or a school aide’s. Getting across campus, managing my bathroom and meal times, etc., it all became my responsibility. So when the scaffolding of home and managed care is gone, you find out quickly what you can do alone and what you’d been quietly relying on others for.

The larger shift came from interning at the Cerebral Palsy Foundation and collaborating with the CP Research Network. That’s where I learned what services and supports I actually had access to. I’d lived with CP my whole life without a full picture of the resources built for people like me. The internships closed that gap: information I should have had years earlier, I finally got by working inside the institutions that hold it.

That knowledge mattered because the advocacy had always fallen to me. My family is immigrant, and the systems that govern disability services here—the paperwork, the eligibility language, the unwritten rules about who to call and what to ask for—assume a fluency they were never handed. They couldn’t navigate what no one had taught them. So I learned to advocate for myself, often before I knew enough to do it well. Once I had the information, that advocacy finally had something solid underneath it.

So if I trace my current health and well-being to its sources, they’re these: being forced into independence, gaining access to information, and learning to advocate inside a system my family couldn’t navigate for me. Well-being, for me, has had less to do with treatment than with knowledge, and the standing to act on it.

Can you describe your experiences accessing health care, therapies, or support services as an adult with cerebral palsy? What has worked well, and what has been difficult or missing?

As an adult, the hardest barrier hasn’t been physical. It’s been the physicians themselves.

Cerebral palsy is still treated as a childhood condition. The expertise, the research, the clinical familiarity… most of it stops at the pediatric line. So when you age out of that and into adult care, you meet doctors who have rarely, if ever, treated an adult with CP, and it shows. The knowledge gap is real, and underneath it sit misconceptions that run from inconvenient to insulting (e.g., assuming a physical presentation means cognitive impairment; assuming CP is progressive; surprise that an adult with CP exists at all).

In practice, this means I often walk into an appointment knowing more about my own condition than the person treating me. I end up educating my physician—correcting assumptions, explaining what CP is and isn’t—before we can even get to what I came in for. The burden of expertise lands on the patient. That’s exhausting, and it’s backward.

In what ways, if any, have stigma, assumptions, or others’ attitudes affected your physical health, mental well-being, or willingness to seek care or support?

Stigma’s clearest effect on me has been on whether I seek care at all, specifically when it comes to mental health care.

For my early adulthood, college insulated me from the worst of it. Within an academic institution, there’s a kind of protection: my competence was assumed, accommodations were built into the system, and the people around me, including providers, started from the baseline that I was a capable adult. I didn’t have to prove my mind before I could be heard.

Outside that protection, the default flips. To a general physician, my physical presentation reads as evidence of mental incompetence. The assumption is that the disability is cognitive, made before I’ve said a word. Especially with my slowed speech, physicians’ eye contact is often directed at whoever I came with rather than at me.

I’ve clung to the therapist I found in college for well into my late 20s. But shortly after the sudden death of my cousin (who’s always been more of a sister to me) this year, that assumption is exactly why I’ve been scared to seek mental health care for the first time as a full adult. Consider what it asks of me: to walk into an office and hand my mind to someone who may have already decided it doesn’t work. To be vulnerable about my mental well-being in front of a person primed to read everything I say as deficit. The stigma doesn’t just sit in the room. It decides whether I enter it. The care I might most need is the care the assumption makes hardest to reach.

Luckily, ten continuous years of talk therapy have well-equipped me with the skills and strategies to cope with recent events, better than I had initially thought. But if and when I feel like I need more support, I honestly don’t know what I’m going to do.

How have work, income, benefits, or disability policies affected your health — positively or negatively — throughout adulthood?

In this country, good health insurance is tied to good employment. That single fact has shaped my adult life more than any diagnosis.

The link is the trap. The strongest coverage comes from a good job, so, in practice, health depends on the work you can get. And working independently after years of failed job hunting, I sit on the wrong side of that link. Buying comparable insurance on my own is difficult and expensive, and the public option covers only the minimum — enough to call it coverage, not enough for the ongoing care that managing CP actually requires.

Then the other side closes in. The job that would solve the insurance problem is harder to land than it used to be. In an AI-driven economy, the stable, well-benefited work the whole system assumes is exactly what’s contracting. So I’m asked to secure my health through employment during a time when employment is the least secure.

For most people, this reads as an inconvenience. For someone with CP, whose care isn’t optional or occasional, it’s the difference between functioning and not functioning. My health is downstream of a labor market — and the policies built around it assume a stability that, for me, has never been guaranteed.

Do you feel like it takes a lot of mental energy to do the things you want to do in your everyday life, things like getting dressed, making meals, getting to work, working, going out in the community, or socializing with friends? If so, how does that impact you and what you do?

Yes, and the cost isn’t only physical. The heaviest tax is mental, and much of it is ableism.

Take going out with friends. Whether I do it rarely comes down to whether I have the energy to get there. It comes down to how much ableism I can tolerate that day: the stares, the assumptions, the logistics no one else has to plan around. On a good day, I have reserves for it. But after a long day, I don’t. The desire is still there; the bandwidth isn’t.

So the limiting factor isn’t my body. It’s how much of other people’s discomfort I can absorb before there’s nothing left for the part I actually wanted: the friends, the night, the ordinary thing. The everyday isn’t tiring because of CP. It’s tiring because of what the world stacks on top of it.

As you think about aging, what changes or concerns related to your body, health, independence, or support needs feel most important or uncertain?

The biggest uncertainties aren’t about my body alone — they’re about whether to build a family around it.

My husband and I are still deciding whether to have children, and my biological clock makes the question less abstract by the year. Part of it is a fear I can name plainly: that a child of mine could be bullied for having a disabled mother, made to carry the ableism I’ve spent my life managing. The harder part: I don’t know how CP will limit me as I age. I can’t promise what my body will allow in ten or twenty years, and I want to be a parent who shows up fully, not one outpaced by limits I can’t yet predict.

So, the real uncertainty isn’t mobility or support needs in the abstract. It’s whether I can hold a future I can’t predict steady enough to raise someone inside it, and the clock won’t let me sit with that question forever. And lately, society feels like it’s regressing to an oppressive past. If you’re not a straight, able-bodied, rich white man in America, you’ve probably felt the impact of certain rights being taken away from you. And, as things stand now, I personally don’t want to bring another life into that kind of society.

What are the biggest struggles or barriers you currently face in your health journey as an adult with cerebral palsy?

The biggest barrier is the same one that’s run through everything else: physicians’ attitudes.

It isn’t physical access, and it isn’t only the knowledge gap, though both of those are very real. It’s having to prove to the people treating me that my life is worth treating, that I’m not a lesser case, not a body to manage at the minimum, not a patient to overlook because the outcome is assumed not to matter as much.

That’s what most urgently needs to change. A physician’s competence I can sometimes work around by educating them. Their attitude — what they believe a life like mine is worth — I can’t. It decides how seriously I’m taken before I’ve said a word. Fix the knowledge, and you’ve solved a problem. Fix the attitude, and you’ve changed whether I’m seen at all.