For as long as I can remember, I’ve been obsessed with dates and numbers. Growing up, I was the only one in my family who seemed to remember the exact date we moved into our big New Jersey house. November 3, 2001, my half birthday. I was exactly six and a half.

In the years that followed, I celebrated our “house-versary” by myself, as the grownups in my family were preoccupied with daily life and didn’t even realize the significance of the date. I now realize that maybe that date held so much meaning for me as a young child because it was mere weeks after the 9/11 tragedy, and grasping onto another date that signaled a fresh start—farther away from the World Trade Center (before New Jersey, my family and I were living in Port Washington on Long Island)—meant that I could continue living my childhood with the weight of the tragedy being somewhat lighter.

As much of a creative, free-spirited person as I’ve always been, my strange fixation with dates and numbers has kept me grounded in reality. Keeping track of time also lets me easily note milestones and smaller achievements at each stage of my life. It’s been over eight years since my family sold that New Jersey house, and even longer since it felt like my “home” anymore. Every November 3rd, I still reminisce about the hope, excitement, fear, and uncertainty that filled my young mind and soul. This November will mark 25 years.

However, this past week marked an anniversary that I never thought I’d have to acknowledge. September 29th—eighteen days after the city observed the 25th anniversary of 9/11—was exactly six months since my cousin very unexpectedly passed away. There is a picture in my ancient photo album from my cousin’s 6th birthday at the start of 2002, the two of us smiling ear to ear as she held onto the Barbie doll my grandparents gifted her. We’d probably forgotten about the devastating tragedy the country had experienced months earlier. But looking at that picture now, I wonder what was really behind our innocent eyes as we were trying our best to continue being children in the aftermath of a once-in-a-lifetime nightmare.

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“Cousins” never fully described the nature of our relationship. Eight months apart in age—minus just one day—we grew up like sisters. She’d get my hand-me-down clothes. We’d fight over who got to keep certain dolls and books (which sometimes ended in full-blown cat fights). My favorite memories from the New Jersey house entail the numerous sleepovers we’d have, almost always staying way past our bedtime to our grandma’s disappointment—gossiping about our respective friend drama from school and which boys we had crushes on. The grown-ups in our family were always shocked at how well she could understand my cerebral palsy-impacted speech, always applauding her for this “special ability.” But, in response, she’d get offended, sassily saying, “Of course, I understand Sarah. She’s my unnie.” (Unnie is the Korean word for “big sister.”)

By mid-elementary school, our parents’ fights kept us from seeing each other to our grave disappointment. I’m sure our parents were wrapped up in their own drama and whatnot, and didn’t even recognize the repercussions of their actions on us. Regardless, we always found ways to keep in touch through instant messaging, text, and, eventually, social media. And when we became adults, we saw each other on our own terms, picking up right where we left off as kids.

In prior years, the start of autumn meant my cousin would visit my husband and me in New York. She was a real global citizen, traveling all over the world for DJ gigs before coming to our quaint Upper East Side apartment to rest and rejuvenate. As much as she had a travel bug, she’d admit that it felt nice to stay in one place for a bit, with family.

Last year, she arrived in late September and stayed with us until March. It was the longest time we had spent together in one go. She even started looking for her own NYC apartment. Maybe it was because all three of us—me, my husband, and her—were entering our 30s that she wanted to start settling down herself, making the city her “home base” after spending her 20s constantly moving from one country to another. (This past January was the first time since that 2001 picture was taken that we celebrated her birthday together.) I think she appreciated my efforts to create a stable and steady life for myself and my husband, even, to my dismay, calling me a “tradwife.” At the same time, she’d acknowledge that I very much wore the pants in the household, taking over the role of our late grandma. Above all else, she mentioned on multiple occasions how refreshing it was to witness true love in our family—a stark contrast to the environments we grew up in.

She’d often say how our living situation was like a real-life version of “Friends.” We’d mostly do our own thing during the day, but always came together in the evenings. We’d cook up some Korean-inspired concoction in the kitchen and eat it together with a bougie bottle of wine—chatting up a storm about our day’s tales, more times than not, ending in a mixture of laughter and tears. Over six months, we watched more movies and TV series together than I can count or even recall now—something she mentioned she’d never had the chance to do with anyone else before, since she’d always been on the run.

In turn, my cousin brought out the “fun and carefree” side of me that’d been dormant since college. I was fortunate enough to get a taste of her DJ lifestyle, always looking for worthwhile afters to attend after her gigs. As much as she liked to party—often being the life of the party—she made a conscious effort to surround herself with good, genuine people who deserved her energy. On these outings, I felt myself genuinely living in the moment, not dwelling on yesterday’s sorrows or tomorrow’s headaches.

I wasn’t ready one bit for my time with my cousin to end so abruptly. Over the past six months, my grief has come in waves; there are chunks of time where I continue moving forward with life because I know deep down in my soul that that’s what she’d want me to do. Her memory is truly a blessing, and I want to honor her by living the absolute best life that I can.

But the reality is that these past few weeks have brought on the worst depression that I’ve experienced to date.1 Although her death was a total accident, there’s still part of me that believes I had failed her by not being able to protect her from life’s ultimate punishment: death. Days before, I promised her that I’d never let anything bad happen to her as long as she was under my care. But then, she moved out of my place and was found dead less than 72 hours later. What if she had stayed with me for a little bit longer? What if she hadn’t felt so much pressure to give up her old ways and “adult,” to pick one place to settle down?

On March 29th, a part of me died with her, and that’s okay to accept. The bond we shared is completely irreplaceable. As someone who was literally born out of death, you’d think I’d have a better grip on grief. But this grief has been unlike any other, and that’s because our relationship was unlike any other. More than cousins, more than sisters—almost like soulmates, kindred spirits. Knowing myself and my fixation with dates, the 29th of any month (including my husband’s birthday) probably won’t pass by without me thinking of her absence. I’ll sit in this grief for as long as it takes me to process it—it might as well be for as long as I’m on this earth.

But this pain, as excruciating as it is, is a visceral reminder of how much I loved her—still love her—and how much of her love I was lucky enough to experience.

My birthday has always been a hard day for me. Over three decades in this world haven’t taught me the right way to balance celebrating the birth of my existence with grieving my mom. I usually try to spend the day (or the days before or after it) with friends and other loved ones. But the shadow of my missing mother — missing her when I never had the chance of meeting her — always follows me.

In 2024, my husband and I got married at City Hall in NYC on my birthday. I thought the trifecta — my birthday, the anniversary of my mom’s death, and our wedding day — would make the day more palatable. In some ways, it has. In other ways, it hasn’t. The older I get, the more I realize that this grief, this mixed feeling, is something I still need to learn how to live with.

This past birthday has been harder than most, as the essay below will explain. For as long as I can remember, writing has always been the antidote to most emotional pain I have experienced. In the days after my birthday this year, I poured my heart out into writing this essay. It was also the first piece of personal writing I had produced in quite some time. I naively pitched it to The New York Times’ “Modern Love” column. Deep down, I knew it wouldn’t be the right fit. But maybe I was on the writer’s high or something.

Two months after submitting it, I received the rejection, although it was much gentler than most. “Although we don’t find your essay right for our needs, I’m grateful to have had the opportunity to consider it,” the editor wrote me.

So it’s going to live here on my Substack instead. From the bottom of my heart, thank you for being one of the very first subscribers to my newsletter — for believing in my work so much that some of you have put dollars behind it. The following is probably my favorite piece of writing that I’ve birthed to date. And I’m proud that it’s going to live under my own publication and terms.

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Saying “Umma”

Umma was my first word. For twenty-two years, that’s what I called my Korean grandma. My birthmom took her last breath as I took my first.

This past May, my birthday fell exactly a week before Mother’s Day. The proximity is the kind of accident the calendar makes once in a while. And, in the seven days between them, I thought quite a bit about the Korean word for mom, umma.

When I first said it aloud at two or three — or whatever age my cerebral palsy-affected speech allowed the word to roll off my tongue — I didn’t realize the gravity of the word, nor that the person I was calling umma wasn’t, in fact, my mom.

By the time I was aware that other kids spat out their first words casually — in protest, hunger, or boredom — I had already learned that saying umma required me to organize my whole body around it. An open vowel, almost a sigh. Then the lips, pressed and held, asked to make a sound through themselves. Then the release. I had to want to say it.

I had my fair share of speech therapists throughout childhood. They had good intentions — they tried to make me sound like my peers — in hopes I’d be understood, heard. I remember practicing in front of mirrors, watching my own mouth. In my head, I’d say the word crystal clear. But what came out of my mouth would be a shock to both them and me. To add to this disconnect, they wanted me to say “mom” with clean consonants legible to strangers. They were not aware, and I could not have explained it to them, that the word my body was actually organized around was a different word, in a different language, for a different woman.

But in my Korean household, with no “American” teachers or therapists around, I freely said umma instead to a woman who was, by then, already a grandmother three times over. I don’t know what her relationship to my mom was. But I can only imagine what it was like to bury her only daughter-in-law, the woman she entrusted to love and care for her son, a person whom she took in as another daughter. Grief of this magnitude would be something I’d only start to understand much later, when I lost the only umma I had known — all but the structure of the family tree — and to only have the memory of her left.

***

My grandma never corrected me; she always answered to umma. She never said, "I'm not your umma; I’m your halmoni.” She just answered.

Later, I would learn that this is what mothering is: not the noun, but the verb — the willingness to answer to a name that, technically, is not yours.

Yet, she was not a soft woman. She believed in systems and correctness. She kept her hair short and her opinions audible. She scolded me in second grade for missing one word on a spelling test. She was the one who truly knew, against other relatives’ skepticism, that my cerebral palsy merely affected my physicality, not my intellect. As traditional as she was, she was very progressive in her views of disability, even coming from a culture where it was the norm to institutionalize folks like me.

“You need to try twice as hard,” she’d often say to me. She probably meant: the world will not love you the way I do, and you will need to be ready.

Perhaps it was because she had been dismissing misconceptions about herself for sixty, seventy years that it was natural for her to hush over relatives who suggested I should be sheltered, placed in a lesser academic school, and be held to lower standards. Ever since I was a baby, she could see the brilliancy behind my eyes.

To this day, every time I accomplished something noteworthy, be it graduating from an Ivy League school twice, getting a byline in a major publication, or getting *the* job, I think quietly to myself, Umma, look, I did it.

***

Going to school was a whole different ballgame. At home, within our family, my grandma could decide what my mind was capable of. But to my great disappointment as a young student, she couldn't decide whether the classroom desk had room for a wheelchair, whether the teacher would call on me, or whether the teacher would understand me when I spoke. For that, the school assigned me a one-on-one paraprofessional.

A paraprofessional is a staff member school admins hire to assist a student with a disability, like me. They’re typically paid less than the teachers. And they are not, in any official sense, your family nor supposed to make decisions about your life. They sit beside you, follow you from class to class and to the bathroom and cafeteria, and provide you, in my case, physical support in completing coursework. Be it picking up the pencil I dropped for the fifth time in a period, transcribing my chicken scratch into something legible, or grabbing my textbooks from the locker.

From sixth through eighth grade, that person was Sharron. Sharron decided early on that I belonged in the room, participating at full capacity. When teachers turned away from me, she turned them back directly at me. When school admins suggested easier classes, a less demanding track, she said “no” on my behalf, sometimes in front of me, sometimes in meetings I wasn’t included in. She wasn’t hired to argue with administrators, to advocate for me. She did so anyway. She did it in the same manner a mother argues for her own children.

Throughout high school, I had Domenica. She was a different kind of fierce — she knew which teachers would accommodate me and which ones would not. And she organized her advocacy for me accordingly, often without anyone asking her to (she also knew I wouldn’t settle for anything less). She was feisty in all the best ways possible. She’d attend meetings that no parent of mine came to. She corrected the language in the documents that inadequately described me. When I gave her the initial list of colleges I wanted to apply to, she dared me to dream bigger. And, oh boy, I’m so glad she did.

Neither Sharron nor Domenica had been hired to do this. Their job descriptions included phrases like “assistive support” and “daily living tasks.” They went above and beyond that, ten times over. And their care and love for me didn’t end when the dismissal bell rang. They took me in as one of their own, inviting me to family functions and taking me on cultural experiences I’d otherwise have missed. In a sense, they took the baton from my grandma and ran as far as they could with it, with me under their wings. The three of them didn’t really know one another. They had no occasion to. But between them, in different rooms and different decades, they shaped me into the woman I am today.

***

My grandma was diagnosed with terminal brain cancer shortly after I graduated from Barnard — and when I was mere weeks into Columbia Journalism School. By then, I had been calling her umma for over two decades — in English sentences, in Korean ones, in the Konglish register as my mother tongue faded. Even after my dad remarried, I had, in my heart, reserved umma just for my grandma. Whenever it was just the two of us, I’d call her that freely. The word absorbed her. In her last weeks of life when she could not remember my name in the last weeks, I sat with her and whispered, Umma. It’s me. Umma.

I don’t know if I was reminding her or reminding myself.

She died in January of 2018. The months that followed had no precedent; I didn’t know what to do with that kind of grief. But I kept my head down and finished my second Columbia degree, because I knew that’s what she would’ve expected me to do. When I walked across the stage to receive my master’s diploma (it was a ten-month-long program), all I could feel was her absence. Just a year prior, she was there, at Radio City, watching me get my Barnard degree. I fully expected, hoped, she’d be there for this milestone, too.

***

What I didn't expect was how grief would slowly illuminate the others. I began to notice other women had been quietly filling the same hole my grandma had been pouring into with her love for years. None of them had ever asked to be called umma. None of them ever would have. They were employees of school districts, professionals filling out timesheets. But the word, the word my mouth had been trained to produce so carefully, the word I had said for twenty-two years to a woman who was not, technically, owed it, had been migrating without my permission. It had been distributing itself. It had been finding people.

This is the part I find difficult to say without sounding like I am tidying it up. My grandma was singular. No one replaced her, or ever could. The emptiness in my heart is the size she was, and it’ll remain that way.

But I had, over the years of my education and the years afterward, been calling other women some version of umma in my head, in the way I leaned toward them, in the way I trusted the room when they were in it. I had not noticed because the sound was internal. I was raised by a woman who answered to a name that wasn’t, strictly, hers. It should not have surprised me that the same thing happened to me: others calling me mom or umma, be it my late younger cousin or my (half) baby sister. I slowly recognized that I, as motherless as I was in the technical sense, have innately inherited motherly instincts from those very three women. I have learned to provide shelter and love to those in times of need. No questions asked, nothing expected in return.

I think this is what mothering has become. We no longer assume the work belongs to one person. We don’t assume it is biological, chosen, or even named. It sometimes accumulates in the aide who decides, on her own time, that you belong in the room, the woman who shows up to the meeting that no parent of yours came to, the staff member who corrects the language in the document before the higher-ups sign it. They mother in the verb tense. They do not require the noun.

This realization would have dryly amused my grandmother. Twice as hard, she would have said, and meant it about everything. But she was also, I think, the original instance of this lesson. She had spent years showing me what it looks like when a woman accepts a name she is not owed and meets the child who gave it to her anyway.

This year, in the seven days between my birthday and Mother’s Day, I’ve said it out loud, to no one in particular. Umma. The word still costs me what it has always cost me — the lips, the breath, the wanting. I want the word to land on someone, but sometimes there isn’t anyone that it can land on.

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.