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.

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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.

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.

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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:

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.

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.

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.

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.

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.

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.

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.

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.

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This Sunday, the Americans with Disabilities Act turns 36. It is not being celebrated so much as defended. I was born five years after it passed. Although I have never lived a day without the law’s protections, I’ve lately had to wonder how many of them will outlast the anniversary.

I reported this piece for Next Avenue in 2022 on the collision of ageism and ableism — the two prejudices I wrote about in my first Substack post last week as they personally relate to me. For this week, I share how I examined the topic from the outside. Next Avenue lost its federal funding and was absorbed into its parent station this spring; it no longer publishes as it did. I’m republishing the piece here, updated, because its argument has only gotten truer and more relevant.

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Maggie Buckley is a health and patient advocate in Northern California who lives with Hypermobile Ehlers-Danlos Syndrome (hEDS), a connective tissue disorder that affects all systems of the body. It comes with co-morbidities like fragile skin, bleeding issues, and chronic pain. She was 60 when we spoke.

There is no standard test for hEDS. Diagnosis is usually made through examination of symptoms and family history, since the condition is hereditary. Because diagnosis involves subjective judgment, hEDS is a difficult condition to have; many doctors fail to recognize it.

Buckley reflects on how the Rehabilitation Act of 1973 — passed about ten years after she was born — prohibited discrimination against people with disabilities by federal agencies, contractors, and programs receiving federal dollars. It also set the stage for the Americans with Disabilities Act.

“Before 1973, people with disabilities didn’t have many rights. They were hidden away and weren’t fully involved in society,” she says.

After the passage of the ADA in 1990, Buckley says, inclusion became more of a reality. The ADA bans discrimination and guarantees that people with disabilities can access equal employment opportunities, goods and services via public accommodations, and state and local government programs.

But even with the ADA and its 2008 amendments, Buckley says more needs to be done to ensure equity and inclusion for people with disabilities — especially those aging with them.

How Ageism and Ableism Collide

Buckley and many other disability advocates affirm the worth of living with a disability, even in old age. She implores us to treat aging people with the same regard we extend to younger people.

Not everyone sees it this way.

One person who unapologetically calls for a systematic difference in treatment based on age is Ezekiel Emanuel, an ethicist at the University of Pennsylvania. He argues that it is reasonable to wish to die at 75, to be spared the burdens of old age.

In a 2014 Atlantic article, he wrote: “Living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, [and] the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.”

Emanuel’s views are challenged by Georgetown University-affiliated disability rights scholars Joel Michael Reynolds and Anna Landre, who argue that his view is factually mistaken. People can and do live fulfilling lives after 75, even with disabilities.

In their 2021 paper on disability and aging, they write: “Everyone, if they live long enough, will experience disability... If you desire a long life, you desire a life that will experience impairment and disability. This is the human condition. Disability is an integral and essential part of what it means to be human.”

The late bioethicist Daniel Callahan made a more careful version of the same argument — that health spending on the old shortchanges the young. In 2009, at 79, he accepted $80,000 in medical interventions for a heart condition, and laughed off the contradiction when asked.

Of Emanuel and Callahan, Reynolds and Landre concluded: “In painting disability and aging as inherently and profoundly limiting to one’s autonomy and possibilities, in treating disability as abnormal, unhealthy, and unexpected, Emanuel and Callahan reinforce harmful societal stereotypes about both what it means to be older and also what it means to be disabled.”

The COVID-19 pandemic showed how such stereotypes play out in dangerous ways. Older adults, particularly those in long-term care, experienced prolonged isolation due to lockdowns and the premature death of loved ones.

The law on the books is one thing. Who gets studied, treated, and taken seriously is another.

A Need for More Age-Friendly Research

Dr. Kathleen Friel, who served as the lab director of the Burke Neurological Institute from 2018 to 2024, researches the importance of motor activity in neurorehabilitation for cerebral palsy. Existing CP research focuses primarily on children and adolescents, so Friel makes a conscious effort to focus hers on adults. In 2021, the Cerebral Palsy Foundation awarded her its National CP Awareness Research Award; her work has included developing an interlimb-coordinated humanoid robot to mitigate abnormal spasticity and synergistic movement patterns, an approach that has shown promise in treating abnormal gait after hemiparetic stroke.

It’s not uncommon for research to focus mostly on the young — the same pattern shows up in autism research. But children with developmental disabilities become adults with developmental disabilities, and adults who age become adults with acquired ones. Both groups need providers who understand complex conditions, and those providers are disappearing.

Dr. Carla Perissinotto, a geriatrician and professor of medicine at UCSF, told Next Avenue in 2021 that she had received more training in pediatrics than in geriatrics. “Yet in any field that you practice, except pediatrics, you’re likely to have older adults be a large percentage of the population that you serve,” she said.

Which means finding your voice — as the patient or the caregiver — is critical.

The Power of Self-Advocacy

As an adult aging with cerebral palsy herself, Friel’s research intertwines with disability justice activism.

She thinks the difference between ableism and ageism may come down to a difference in activism: younger disabled people have grown up with their disability and identify with it, so they’re more likely to engage in political action than older adults who have only recently become disabled.

Activism is critical to ensuring equity in health care — and Friel places responsibility on how the ADA is enforced.

The workplace tells the same story about enforcement. When internal IBM emails surfaced in 2022 showing executives calling older employees “dinobabies” to be made “an extinct species,” the company settled within a month of the emails becoming public — and related age-discrimination suits kept coming for years afterward.

Alan Gutterman, a lawyer and founder of the Older Persons’ Rights Project, sees the movements as related. “There is much that they can learn from each other,” he told me.

Gutterman started his organization after noticing a disconnect among his aging colleagues. Even among peers who were themselves older, few were interested in a human rights approach to advocacy. They focused instead on what he calls the “day-to-day” legal protections: estate planning, guardianship, Social Security.

He speculated the reason could be denial — and the fact that his colleagues came from higher socioeconomic backgrounds, “therefore, [they] aren’t experiencing some of the things that others might be.” Lower-income individuals are at higher risk of developing physical disabilities; wealth buys distance from the problem, and distance buys disinterest.

What Changed

When I interviewed Gutterman in 2022, he pointed to a vacuum. “The United Nations has conventions about children, disabled persons, gender and racial discrimination,” he said. “However, it does not have a convention regarding the human rights of older persons.”

There was some advocacy on how to age well, he noted, but much of it was commercial. That was the state of things when this piece first ran.

Gutterman told me in 2022 to fight the good fight, that movements ebb and flow. He was righter than he knew, in both directions at once. The convention his vacuum called for is finally being drafted; the law my life has depended on is being narrowed — everyone who lives long enough crosses from one constituency into the other. Which version of the fight is waiting when we arrive is being decided now.

A version of this article was originally published by Next Avenue on November 1, 2022, as part of The Future of Elder Care, an initiative supported by The John A. Hartford Foundation. It has been updated.

Over the weekend, while I was out and about running errands in my Upper East Side neighborhood, I overheard two women chatting about the logistics of bringing in an esthetician to do “bulk Botox” at their next association meeting (maybe the PTA? Philanthropy group?).

The first thought I had was, oh god, I hope no one actually signs up for that.

My second thought was, as I saw almost half of my fellow pedestrians were clearly over the age of 60 (and predominantly women), what’s the point?

Living on the Upper East Side for the past three years, I’ve been exposed to and interacted with older adults more than ever in my short 31 years. In fact, that’s one of the factors that drew me to this neighborhood: the common denominator between me, a young woman with a physical disability, and the old folks is that we both need accessible places. And a place full of the aging old money—along with their kids who are parents with strollers for both fur and human babies—will make that happen.

But, having been born out of death (complications of my birth left my mom dead and me with cerebral palsy), and that coupled with losing my beloved younger cousin just this past March, it’d be an understatement to say that death has been on my mind, and the fact that both of them were in their early- to mid-30s isn’t lost on me. Is this some kind of generational curse? Perhaps.

However, thinking of death isn’t a recent development for me. Ever since I came to the age of consciousness and awareness, human mortality has been ever-present. Before I even became aware of the story of my birth, I’ve had this innate fear of losing loved ones. During my early years of life, my grandma was my primary caretaker, and I still remember how strong my separation anxiety was. What if something happens to her and she ceases to exist? Will her old, frail body be able to handle this heat? This cold?... would be the kinds of thoughts that’d flood my young mind whenever she’d go out to run errands. And decades later, I have similar thoughts whenever my husband goes outside by himself. The same rang true whenever my late cousin would leave for a new country, new city.

Maybe it’s post-traumatic stress disorder. Maybe it’s obsessive-compulsive disorder. Maybe it’s severe separation anxiety. Or, maybe it’s the only way I’ve known to be, and it doesn’t call for a diagnosis. After losing my grandma eight years ago and my cousin four months ago, I came to accept that death is, truly, inevitable. It doesn’t care about my fears or anxieties; it will, eventually, come for everyone I love.

But as someone who’s still very much in the business of living, I need to grapple with getting older in a society that’s increasingly obsessed with youth. Despite looking almost exactly the same as I did when I was 12 (a fact that close friends and family take every opportunity to remind me of), having cerebral palsy is definitely speeding up my aging process. When your body needs to work twice—if not more—as hard as the average person to function, it’s a given that the wear and tear of your body will occur at an exponential rate. In fact, my cerebral palsy specialist reminded me of this fact just last week during my annual check-up. My “CP falls” are leading to broken bones for the first time as of two years ago. I can basically hear osteoporosis knocking on my door.

Here’s the kicker, though: most cerebral palsy research and care is heavily focused on pediatrics. Yes, it’s a developmental disability that occurs at birth or early childhood. But the kids grow up. In fact, my CP specialist is one of the very few practitioners who focus on geriatric care for people with the disability, albeit it’s within the pediatric neurology department of Columbia’s medical center.

I’ve published an article in the Developmental Medicine and Child Neurology journal on this very topic: how much of a clusterfuck it is to navigate the healthcare system as an adult with cerebral palsy. And a few weeks ago, I participated in an autoethnographic study with the University of Michigan on the effects of aging on the lives of adults like me living with cerebral palsy, my answers to which I will share with you in a later post.

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Death, aging, and disability. The first half of 2026 has insisted on all three.

There’s one intersection I pass often where a senior living facility and a med spa selling anti-aging treatments sit across from each other. I used to read it as irony. Lately, I read it as a choice the culture has made: we will spend anything to not look like the people across the street, and almost nothing to care for them. For days, I’ve kept thinking about those two women and their bulk Botox. Not with judgment, exactly. The fear of aging is just fear of death with better marketing, and I understand fear of death better than most. The difference is that I don’t get to outsource mine to an esthetician. Death made me, shaped me, and keeps taking from me.

The only response I’ve found that works is attention: looking directly at the things most people spend their lives looking away from, for as long as I’m in the business of living. That’s where this Substack begins.