Caregiving is a two-way street. It has to be in order to work.

I said that in a piece about a television show, so I didn't want to digress. Here’s the version I’d have given if we’d had the room.

What it looks like in the room

Spoilers ahead.

On FURIOUS, I play Alden. Catherine, played by Lola Petticrew, is his caregiver, though he knows her as Vanessa, and by episode six, the audience knows considerably more about her than he does. She bathes him, feeds him, gives him his medication, and does the whole list of tasks the healthcare system files under “activities of daily living.” That’s a phrase invented by someone who’s never had to ask another human being for help getting into a shower.

On paper, that’s their whole relationship. She gives, he receives, and the arrow points one direction.

What the show really got right is the part that never makes it into a care plan. Alden gives her a place to live and a space to be herself. He doesn’t want anything from her beyond her company. He isn’t grateful in the way people expect disabled men to be grateful, which is to say apologetically.

I’ve been on my end of that arrangement my entire adult life. What nobody writes down in a bi-annual recertification form is that it requires actual work from both people.

When I talked to Lola about how to play those scenes, a lot of what I gave them was practical. This is how you shower or feed me. It’s what I’d tell any new aide, because I’m the one who knows.

But, the harder part was the rest of it. What’s your history with this person who’s keeping you alive? What do I do for them? Those questions have to get asked out loud, and boundaries have to be set. It’s very easy for a caregiver to burn out and there’s nobody in the system whose job it is to notice.

In an arrangement funded by the state, the person responsible for protecting the worker from burnout is the disabled person she’s being paid to take care of.

That’s the two-way street, and I want to be honest about it. Half of it is love and half of it is a gap in the infrastructure that we fill ourselves because nobody else will.

The lie underneath

Society has told a lot of lies about disabled people. The biggest one is that we’re a burden.

The way out of that lie is understanding that everyone receives care. When you take the bus, you didn’t get there alone, somebody drove it. When you order groceries because you’re too tired or sick to shop, that’s care. You paid a stranger to provide it for you.

The difference between you and me is volume and visibility. My care shows up as a line item. Yours is dispersed across a hundred transactions you don’t think about, most of them performed by people paid worse than they should be.

Once you understand that, “burden” stops describing a category of person and starts describing an accounting choice.

Where the mutuality runs out

Everything I just described happens inside a room, between two people, and it’s real. It also can’t fix a single thing about what that work pays.

I can protect my aide from burning out. I can’t give her a raise or health insurance.

According to PHI’s 2025 data, the median wage for direct care workers was $17.36 an hour in 2024. Because so much of this work comes in part-time hours, median annual earnings landed just under $26,000 in 2023. Thirty-six percent of that workforce lives in or near poverty.

49 percent rely on public assistance to get by.

Roughly half the people paid to keep disabled people alive need public assistance themselves. The same government that pays my aide also has to feed my aide, because what it pays her isn’t enough to live on. Medicaid is standing on both ends of the transaction and pretending it’s only on one.

The trend makes it worse. Home care wages went from a median of $13.07 in 2014 to $16.77 in 2024, adjusted for inflation. Direct care workers earn less than workers in other jobs with similar or lower entry requirements in all fifty states and the District of Columbia. Meanwhile, the field is looking at roughly 9.7 million total job openings between 2024 and 2034.

People would call that a labor shortage. A true shortage implies the workers don’t exist. They exist, but they’re leaving, because we designed a job that can’t cover average monthly rent and then act surprised when nobody stays.

I’ve retrained more aides on my ventilator settings than I can count. Each time, somebody reliable leaves for a job that pays two dollars more and doesn’t require lifting a grown man. I don’t blame a single one of them. I’d do the same thing.

What it costs to do this properly

For the scene where Catherine bathes me, the production brought in an intimacy coordinator. I talked with her almost a month before we shot it. There was also an accessibility coordinator on set whose job was making sure I was comfortable and advocating for me when I was too locked into the work to advocate for myself. Not once did I feel unsafe.

A television production spent real money making three minutes of pretend caregiving safe and professional for everyone in the room.

The actual caregiving industry, the one operating in millions of homes right now, has none of that. No coordinator, preparation, or anyone whose job is watching whether this arrangement is working for both people. Just a worker, a disabled person, a list of tasks, and whatever the two of them can figure out.

We know what it takes to do this well. We do it for fiction, but we don’t fund it for life.

Why the job pays this way

When the New Deal built America’s basic labor protections, domestic and agricultural workers were carved out. That exemption was about who was doing it and the votes required to pass anything at all. Governor Phil Murphy’s office said in 2024 that New Jersey’s Domestic Workers’ Bill of Rights was a remedy for a historical legacy of racial prejudice that excluded domestic workers from wage and hour laws.

I spoke in front of state legislative committees for three years to get that bill passed. It was signed January 12, 2024 and took effect that July. Underneath the press release, it extended the New Jersey Law Against Discrimination and the state Wage and Hour Law to domestic workers for the first time.

I’m proud of it and I want to be accurate about its size. It’s one state with one set of protections, decades too late.

The coalition that’s been sitting there

Disabled people and home care workers get written about separately, and have for as long as I’ve been aware of these mechanisms.

We’re covered as a cost, while they’re covered as a workforce. That separation is useful to somebody, but it’s never once been useful to us.

We’re funded by the same dollar, and any cut breaks both ends at the same time. There’s no version where they win and we lose. Raise the wage, the workforce stabilizes, and I stop losing someone every eight months. Cut it, she’s job hunting, and I’m looking at a facility, which costs the state more than either of us did.

Nobody here has to be persuaded to care about the other side. The math already did it.

Back to Alden

What the show understood is that there are two directions in that relationship, and the paperwork is designed to only see one of them.

She keeps him alive and he gives her a place to live and somewhere to be an entire person out loud. Only one of those has a billing code attached.

That’s every relationship I’ve had with someone who works in my home. The forms record the tasks and miss the person. We then build policy off the forms and act confused when it produces outcomes nobody wanted.

Pay them more. It’s the cheapest thing anyone could do here, and I’m saying it as the guy whose care is the expense.

Solidarity forever.

-Steve

It’s the same word we use for me getting into a building.

Nobody has ever described a person with fully functioning legs as having access to a staircase. They walked in, the stairs were there, they used them, and the entire process produced no vocabulary to describe it. It didn’t need a word, because nothing happened worth naming.

I get a word.

Access is what you ask for. It’s a request, and requests can always be declined. You can be denied or granted access. It’s a permission structure with a person on the other end of it deciding, and the word has that built into its bones no matter how kindly or pleading anyone says it.

Compare that to how everyone else moves through the world. They don’t have access to the grocery store. They just go to the grocery store. They don’t have access to their office. They just work there.

The difference isn’t the ramp or elevator. The difference is that one of us is doing something society has deemed ordinary and the other is receiving something out of goodwill.

Then there’s the other problem, which is that “accessible” is a yes or no question covering about forty different things.

Somebody asks if a place is accessible and someone else says yes, and both of them believe they’ve communicated. Typically, neither has any idea what the other one meant.

Accessible could mean there’s a ramp. It could mean there’s a ramp and also the bathroom is a broom closet with a grab bar installed at what I can only assume was eye level for a Victorian child. It could mean the front door works and the second floor is a rumor. It could mean the building is fine and the event is on a raised platform with no ramp, which happens constantly, at conferences about politics and disability.

In 2016, I was asked to do stand up at a DNC event in Philadelphia. The building and room were accessible, but the stage was elevated, which made me have to do my set in the front row of the audience. An event that prided itself on diversity had no problem making me perform different from everyone else.

The hypocrisy of identity politics at its finest.

The word flattens all of that into a checkbox which is something an institution can complete. It’s the reason why the word survives because it lets a place declare itself finished when it has no idea what true access is.

I don’t think I’ve ever entered a building that was finished.

Somewhere in the last twenty years, access became a profession.

There are accessibility departments now, along with accessibility consultants, accessibility audits, and accessibility statements at the bottom of websites. Some of that work is genuinely good and the people doing it are often the only ones in the room who’ve put any thought into this.

But, the word floated up and away from the body while it happened. Access became a compliance category, a line item, or a thing you achieve a certain percentage of. It stopped meaning “can he get in” and started meaning “are we exposed.”

It puts the question in a department. Departments have budgets and budgets have priorities. Now, whether I can use a bathroom or not is competing for resources against a software upgrade.

That’s the logical outcome when a word gets professionalized. It means the thing I need has been translated into a language I’m not qualified to speak, discussed in rooms I’m not in, and by people who are measuring it against other things that cost less.

You know what I want?

I want the word to be boring.

I want access to be as unremarkable as a doorway. I want it to be so unworthy of comment that nobody builds a department around it, the way nobody has a Stairs Department. Stairs are just in the building. Nobody audits them or writes a statement about them. Nobody asks whether the stairs are on the roadmap this quarter.

The goal isn’t better access. The word needs to stop being necessary.

It doesn't look like everyone being very good at accommodating me. Instead, it’s just… nothing happening. It’s me going somewhere and there being no story afterward, which I realize is a strange thing for a writer to want, and I want it anyway.

When you hear the word, listen to which way it’s pointing.

If someone says they provide access, they’re describing something they give and can take away at any time like a season dinner menu. If someone says they need access, they’re describing something they’re missing. Both of those sentences have a gatekeeper in them, and the gatekeeper is the real issue.

I don’t want access to the building.

I want to go inside like everyone else.

Solidarity forever.

-Steve

She didn’t ask. That’s the part people don’t understand about this. She saw me, decided something, put her hand on my head, and started talking to God about my legs while I sat there in a wheelchair.

This happens to disabled people constantly. Strangers, church people, a guy at a grocery store, somebody’s grandmother. They mean it kindly. That’s not in dispute. I’ve had a version of the same conversation enough times that I eventually worked out what actually bothers me about it, which took years, because the first several hundred times I just said “thank you.”

Here’s the question I want to ask them:

If God doesn’t make mistakes, what exactly are you praying for?

That’s the one that gets said to disabled people in church basements and hospital rooms and comment sections. God doesn’t make mistakes. Everything happens for a reason. You were made this way on purpose.

I’ll take that more seriously than the people saying it do.

If I was made on purpose, then praying for me to be healed is asking God to undo His own work. You’re waiting for a train petitioning the Almighty for a revision. You’re telling Him He got it wrong, while quoting the doctrine that says He can’t.

You can believe I was made this way on purpose, or you can believe I need fixing. Pick one. Most people want both and want the disabled guy to nod along while they hold them at the same time.

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The story people are being told about why this is necessary and the story the government’s own inspector general published recently aren’t the same.

What actually changes

The 2025 reconciliation law requires states to condition Medicaid eligibility for expansion adults on eighty hours a month of work or qualifying activity, such as school or volunteer work, starting January 1, 2027. The law exempts people who are “medically frail,” and it names five categories:

-Blind or disabled
-Having a physical, intellectual, or developmental disability that limits activities of daily living
-Substance use disorder
-Disabling mental disorder
-A serious or complex medical condition.

That sounds like a real exemption. Congress wrote it as one.

On June 1, CMS issued a nearly four-hundred-page interim final rule interpreting it. The rule says states can’t expand beyond those five categories, and that being in one of them isn’t sufficient on its own. The condition must also significantly impair your ability to meet the eighty-hour requirement, and you have to document that.

CMS said that having a condition on your state’s list will not automatically make you exempt. The paperwork becomes the answer.

CMS’s own estimate is that this will reduce Medicaid enrollment by 2.3 million people in fiscal 2027, rising above 3 million after that. That’s the agency’s projection of how many people its rule removes. Nobody is arguing about that number, because the government published it.

Twenty-five states and DC sued over it. On July 30, a federal judge in Massachusetts declined to pause the rule while the case proceeds, on the grounds that the states hadn’t shown irreparable harm since CMS agreed to reimburse ninety percent of their implementation costs. He explicitly didn’t rule on whether the rule is lawful. That comes later, before January.

Worth noting what the states were arguing about. They said they don’t have the staff to build this by January and that it would cause harm and chaos. The judge said the money’s reimbursable.

The money is always reimbursable. The chaos isn’t.

It already started

On August 1, Nebraska became the first state in the country to remove people from Medicaid for failing to meet the new work requirements. Roughly two hundred people lost coverage that day.

Nebraska didn’t have to do this yet. The federal deadline is January. The state’s Medicaid director, Drew Gonshorowski, said they went early in part because he believes the rules will help people move toward economic stability. His words were “why wait.”

Here’s what you should know about Nebraska before you decide what this means.

It’s close to the “best” possible version of this. The state runs its own eligibility system, which many don’t. It can confirm compliance for about three quarters of affected people automatically, without ever contacting them. It has roughly seventy thousand people subject to the requirements, which is small enough for a hands-on process. It sent tens of thousands of letters, texts, and emails, and ran radio and TV ads. Gonshorowski said his team built in extra steps, reviewing every denial multiple times before it went out, because they don’t want people falling through the cracks.

Two hundred people fell through anyway.

And even in the best case, the friction showed up immediately. Advocates said the state’s notices were confusing and left low-income people unsure whether the rules applied to them at all. Reporters testing the state’s Medicaid help line hit long waits, a dropped call, and trouble getting through on the Spanish-language line.

Now think about the other forty-three states. Most are bigger. Many run eligibility systems that can’t automate three quarters of anything. None of them got the extra months Nebraska took. All of them have to do this by January.

The estimates of how many people lose coverage nationally range from three million to 8.6 million by 2028. That spread should tell you something about how confident anyone actually is.

But a big issue to be faced in the future is what Gonshorowski said he’s watching. He said appeals and fair hearings are the real measure of whether a state got it right, and that what keeps him up at night is a state getting it badly wrong because it missed that someone had a disability, or missed that they had earned income every month. He called that the one scary number.

The man running the first implementation in America named the failure mode himself, unprompted, and the failure mode is missing that someone is disabled.

The first Americans to lose coverage under this law lost it in the state that tried hardest to get it right.

Why we’re told this is necessary

For more than a year, the administration’s public case has been that people are stealing from these programs, and specifically that immigrants are. In May, Vice President Vance warned about tens of billions in fraudulent California payments going to undocumented people. The head of CMS claimed hundreds of millions in questionable expenditures tied to immigration. Stephen Miller went ahead and blamed the national debt on it.

If that’s true, then verification requirements make sense. We’re not cutting anyone off, we’re just checking.

What the government’s own report found

In July, the HHS Office of Inspector General submitted its semiannual report to Congress, covering enforcement actions from October 1, 2025 through March 31, 2026.

The money is at the top.

The CEO of a health care software company ran a telemedicine and durable medical equipment scheme worth more than a billion dollars, and was sentenced to fifteen years and $452 million in restitution. The owners of several wound graft companies submitted more than $1.2 billion in fraudulent claims, targeting Medicare beneficiaries, many of them in hospice. An insurance brokerage executive and a marketing firm CEO each got twenty years for a $233 million scheme that enrolled tens of thousands of people in ACA plans without their consent, targeting people experiencing homelessness, mental illness, and addiction.

Those are the headline cases. There are smaller ones in the report too, like individual providers and small practices. But, the dollars are concentrated at the executive level, and it isn’t close.

I want to be precise about what that does and doesn’t prove, because I don’t want anyone dismissing this on a technicality. An enforcement report shows what got prosecuted. It isn’t a census of everything that happened.

But, think about what that means here. This administration has spent more than a year looking for immigrant healthcare fraud. It controls federal enforcement and has every incentive to find those cases and every reason to feature them. Despite that, its own inspector general filed six months of enforcement actions and immigrants appear nowhere in the report as perpetrators of fraud.

If the cases were there, they’d have been brought.

There’s one more thing in that report worth noting.

OIG’s oversight of Medicare Advantage produced two settlements totaling $674 million, against two of the largest MA organizations in the country. The whistleblower allegations were that the plans submitted inaccurate diagnoses to make their enrollees appear sicker than they actually were, because sicker enrollees mean bigger government payments.

Five Kaiser Permanente affiliates agreed to pay $556 million. Between 2009 and 2018, they pressured physicians through financial incentives and internal targets to go back and add unsupported diagnoses to medical records. Aetna agreed to pay $117.7 million for the same category of conduct.

Insurers got paid more when patients looked sicker, so they made patients look sicker.

What happened to the people who actually did it

In May, the President granted clemency to Lawrence Duran. Duran owned a mental health company called American Therapeutic and was serving fifty years for orchestrating a $205 million Medicare fraud scheme.

Rick Scott was CEO of Columbia/HCA, the hospital chain at the center of what the Justice Department itself called the largest health care fraud case in U.S. history. The final figure was $1.7 billion, across settlements in 2000 and 2003, resolving allegations that included cost report fraud, kickbacks to physicians, and systematically overbilling Medicare and Medicaid.

The criminal charges weren’t entered in Columbia/HCA’s name. They were entered by two defunct subsidiaries, because a conviction under the parent company’s name would have triggered automatic exclusion from Medicare funding.

The company kept billing Medicare and no senior executive at Columbia/HCA was ever charged with a crime. Scott resigned in 1997 as the investigation closed in, and in a related civil deposition he invoked the Fifth Amendment repeatedly.

Then, he ran for governor of Florida and won. Then, he ran for Senate and won.

Then, last summer, he decided healthcare cuts weren’t deep enough. He filed an amendment to add another $313 billion on top of what the bill already did, dropping the federal match from 90 percent to 50 percent for new expansion enrollees after 2030. Nine states have laws on the books that would automatically end their Medicaid expansion entirely if the match fell that far.

The Senate declined to take it up. He voted for the bill anyway.

I have to prove I’m still disabled. He didn’t have to prove anything.

An analysis from the California governor’s office found that Trump’s pardons have wiped out close to $2 billion in victim repayment and taxpayer recovery across Medicare, tax, and other fraud. Meanwhile, the internal enforcement mechanisms have been cut and inspectors general have been fired.

The enforcement apparatus that catches actual fraud is being dismantled, the people convicted of actual fraud are being released, and the verification apparatus is being built to point at people like me.

By OIG’s own accounting, every dollar it receives in funding returns $12.70 to the federal government, and its Medicare and Medicaid work returns $15.20 per dollar.

Fraud enforcement is one of the few government functions that pays for itself several times over. It’s being cut anyway.

The part that makes me tired

I have to continually prove I’m still disabled.

Every disabled person on public benefits knows this ritual. My body hasn’t changed its mind and never will. My condition is progressive, which means it moves in exactly one direction, and every doctor who has ever examined me agrees with my DNA on this point. And still, at intervals, the system requires that I demonstrate it again and again.

You should hear the silence when the Medicaid customer service rep finds out my birthday and beginning of my disability are on the same day.

Starting in January, for people in the expansion population, it won’t be enough to be disabled. You’ll have to document that your disability significantly impairs your ability to work eighty hours a month, and if your paperwork doesn’t arrive, or arrives wrong or late, you lose your coverage.

Beginning in 2028, you may attest to medical frailty once per enrollment period. As though a body might get bored of being the same body.

Lawrence Duran stole $205 million and went home. Rick Scott ran the company at the center of the largest healthcare fraud case in American history and went to the Senate.

The mechanism

Fraud is the justification and verification is the mechanism. Disabled people are who it hits hardest.

Notice which direction the paperwork runs.

When an insurer stands to gain by making me look sicker, the documentation appears. Diagnoses get added to charts years after the fact. When I stand to lose coverage unless I prove I’m sick enough, the documentation becomes my problem, and if it doesn’t arrive on time, I’m the one who pays the price.

Same medical record and disability, but the responsibility falls wherever the money isn’t.

You don’t have to prove a single case of beneficiary fraud to get the policy. You just have to say the word enough times next to photos of people from Somalia that verification sounds reasonable. Then, you build a system where the burden of proof sits with the person who’s sick, and you let attrition do the rest.

Nobody gets declared ineligible and no politician has to defend a sentence like “disabled people shouldn’t have healthcare.” The coverage just quietly stops, one incomplete form at a time, and the resulting number gets described as people who didn’t comply.

What I want you to do with this

If you work in Medicaid administration, state government, disability services, or health policy, keep a close eye on what your state does with the medically frail definition. That single decision determines who in your state stays covered in January.

If you don’t, then just know the actual shape of it. When the coverage numbers drop next year, they will be described as fraud prevention working. In reality, it’s the paperwork working.

I’ll be over here proving I’m still disabled.

Solidarity forever.

-Steve

That’s a unit of measurement for people like me.

Here’s how my week started. I had a show premiere on Hulu at midnight and an essay in TIME published at six in the morning. Between those two things, I did the work you do on a day like that, which is mostly typing and talking. By the end of it, my body had filed a formal objection, and Tuesday was spent paying the invoice.

Changing the channel between Barbie and House of the Dragon took a few minutes.

Every good week costs me a bad day or two on the other side. I’ve known that for years, but what’s new is that I finally have weeks worth paying for.

Something changed in the last twelve months and I still haven’t adjusted to it.

For most of my career the problem was that nobody was asking. Now people are asking… a lot. There are emails I haven’t answered and I’m having conversations about next year. Somebody wants to know if I’m available in October, and I’m apparently expected to have opinions about that.

This is the thing I wanted and signed up for. I want to be clear about that, because I’m about to complicate it and I don’t want the complication mistaken for ingratitude.

I have a progressive condition which means my body is not a fixed set of terms I negotiated once. The version of me that shows up in October is a slightly different negotiation than the one typing this with my left pinky finger.

When someone asks about October, there’s a logistical calculation running underneath the answer that most people don’t have to do. What will this physically cost? What else am I doing that week? Who’s traveling with me? Is the thing I can do easily right now still going to be easy?

I say yes anyway, but there’s a math problem to be done, and I’m the only one who can see it.

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For context, this was on purpose. It was a wrestling match, he’s a professional, and the drill was part of the performance in the way that everything in wrestling is part of the performance right up until it isn’t. I was watching this with genuine appreciation, because I was also, at that exact moment, writing captions to promote my own acting.

Two guys doing the job. He goes to work and takes a drill to his head and I go to work and say lines sitting in a chair. Neither of us has what you’d call a normal relationship with our body being at the office.

Today, people are using a specific set of words about me. Overnight. Finally. Big break.

I want to do a little math with those words.

I’ve been auditioning for over 10 years. I don’t have an exact number of auditions I've done because at a certain point counting becomes a form of self-harm, but it’s enough that I have a preferred corner of my apartment for the lighting and a strong opinion about it.

There’s something nobody prepares you for about acting, and it has nothing to do with disability.

It’s mostly silence.

You get sides on Tuesday, four hours are spent on something that takes ninety seconds, and you rope in whoever’s around to read the other part, which means you’ve heard your loved ones deliver professional dialogue with all the conviction of a hostage. After you submit it, nothing happens, forever, and eventually you understand that nothing happening was the answer.

Nobody calls to say no.

I once auditioned for a Marvel project with my right eye swollen completely shut.

I’d had a bad reaction to makeup. There I am, doing the biggest audition of my life at the time, with one eye, looking like I’d lost a fight in a parking lot. And you can’t reschedule so you just do it with one working eye and a face that has opinions about you.

I still think about that tape. Somewhere in a Marvel casting archive there’s footage of me acting my heart out with one eye, and I hope whoever found it had a good day.

My body embarrassed me at the worst possible time, which is a thing that happens to every actor alive.

Then, there’s the other set of questions, which run underneath the first set the whole time.

Where’s the audition? Is there a step? Is the callback in the same building or a different one, and has anyone been in the different one? What floor? Is the elevator the kind that works or the kind that’s technically there? Where’s the bathroom, and is it the bathroom or is it the bathroom with a grab bar bolted three feet from anything useful?

None of this is anybody being cruel. People tend to get that wrong when I describe it. It’s that nobody thought about it in advance, because nobody made them, and so the thinking rests on me.

Which brings me to the actual tax, and it isn’t stairs.

It’s that I have to be the one who always asks.

Asking costs something completely separate from whatever answer I get. The second I ask for something, I’m the complication. I’m the guy with the situation, before anyone in that room has heard me read a single line. Now, I’m managing their discomfort about a question I didn’t want to ask either, and I’m doing it warmly, because warm is what keeps the room from tightening.

The sad part is when you get good at it. You develop a knack for timing and learn to bring it up early enough that it’s useful and late enough that it isn’t the first thing they know about you. That’s a skill nobody should need to have, and yet many disabled people are proficient in it.

For a long time I was gracious about all of it, because it felt like the price of the room.

I stopped being gracious somewhere around the four hundredth time somebody asked me a question they thought was generous.

“When was the first time you saw someone who looks like you on TV?”

The honest answer is: when I saw myself.

There wasn’t a guy before me who looked like me and did this. I didn’t grow up watching someone and thinking maybe I could do that. I got here without that, and then I turned on a television and there I was. It’s a strange thing to be, and not the warm thing people are hoping to hear when they ask.

So, Furious.

Elizabeth Meriwether wrote the part for me. She’s said so publicly, and I’ve watched people receive that as an act of charity, and I want to be precise about what it actually was.

It meant the thinking happened before I arrived.

Nobody had to be asked. There was no moment where I became the complication, no warm management of anybody’s discomfort, and no calculating when to escalate something. It was handled in advance by a well-respected professional who decided to handle it, and the result was that I got to roll in and just be an actor doing a job.

I’ve done this long enough to tell you how rare that is for someone like me, and how little it would cost to be common.

In the end, nothing got overcome. The barriers are all still exactly where they were, and the next job I get will start the same way every other one has, with somebody asking whether there’s a step at the door.

One person made a good decision and it changed my year, and it is not a system, and if you finish reading this feeling great about how it all worked out, the feeling has a shelf life of about one casting cycle.

However, the industry was shown how it should be done. There’s no excuse for it not to change.

After the wrestler took the power drill to his head, he got up.

That’s typically how wrestling works. You take the bump, get up, and you go to work again in a few days. The crowd usually doesn’t see the twenty years of driving to high school gyms in front of forty people that got you to the arena.

Nobody sees the tapes, the eye swollen shut, or the four hundred kind questions.

That’s show business.

I just want to keep working.

I write this newsletter twice a week, on disability, healthcare, and the machinery underneath both. It’s free to read because paid subscribers keep it that way for everyone else.

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Solidarity forever.

-Steve

I know I’m always welcome. The call is to find out whether there’s a step at the front door, and if there is, how many, how big, and whether the ramp they keep describing as “around back” is an actual ramp or a sheet of plywood somebody’s cousin laid down in 2011. Or, if there even is a ramp at all.

I once called and sent a friend inside a new coffee shop with a step to ask if they had a ramp. After I made a video calling them out for not having one, people on social media called me evil, petty, a douchebag, and said I should go somewhere else.

Thirty-six years into the Americans with Disabilities Act, here’s the most useful thing I know about access. Access has almost nothing to do with how anybody feels about me.

People think it does. They use the word the way they’d use “hospitality.” We’re a very accessible workplace and everyone here is so accommodating. What they mean is that they’re nice, and if I showed up with a problem, they’d want to help.

I believe them because they’re usually telling the truth about themselves.

And then I get to the door and there’s a huge step.

The step doesn’t know they’re nice. It has no opinion about me at all. Somebody drew it on a piece of paper before I was born, a contractor poured it, an inspector signed off, and now it’s a fact sitting in concrete. Every good intention in that building is standing on the other side of it, waving.

Access is a series of decisions made in advance by people who never met me and never will. The architect, the city, the guy who set the budget, the person who chose which bathroom to renovate and which one to leave alone. They all decided whether I’d get in the room years before anyone knew there was going to be a me.

The building doesn’t know my name, so it doesn’t like me or dislike me. It has a step or it doesn’t.

Once you see it that way, the ADA stops being an abstraction and turns into one of the more clear-eyed things this country ever passed. The law was written to understood that goodwill runs out.

Goodwill is real and shouldn't go unnoticed. It’s also unreliable, unevenly distributed, and impossible to schedule. It depends on whether the manager on duty is having a good day, the person at the desk finds you sympathetic, or you’re the kind of disabled person people enjoy helping. I can tell you from experience that’s a category with a strict dress code and office hours.

Nice people are wonderful, but you can’t build a life on being liked. If my ability to attend a meeting, use a bathroom, vote, get an education, or hold a job depends on somebody deciding I’m worth the trouble that morning, then what I’ve got is a lucky streak. Lucky streaks always end.

So, the law did something unglamorous and enormous. It moved access out of the category of kindness and into the category of requirement. It made the step a problem whether or not anyone in the building is a good person. It made the answer to “can he get in” something you have to answer with a ramp instead of an apology or a free coffee.

Rights work when you’re not in the room. That’s their entire advantage over kindness. A right keeps operating on days nobody’s thinking about you and in buildings that go up after you’re dead.

Thirty-six years in, that idea has accomplished a lot. It built the curb cuts every stroller and rolling suitcase in America now depend on, the captions half the country watches TV with, and the ramp I use to get into my own life. Most of it’s invisible to the people it serves, which is the highest compliment infrastructure can get.

It’s also far from finished. I still get walked past a beautiful front entrance and around the side, past the dumpsters, to a door that needs a staff member with a key, and I’m still expected to be gracious about it, because somebody went to some trouble.

But the single thing I watch for the most, more than any individual step, is discretion coming back.

Access that depends on enforcement can go unenforced and if it depends on funding, it can get defunded at any time. When that happens, nobody announces that your rights are gone. The law sits on the books looking exactly the same. What changes is that getting in starts depending on goodwill again.

I’ve lived both versions. I know what it feels like to roll into a building that was built with me in mind, and I know the humiliation of sitting outside one, talking to a manager, and being told very warmly that they’d love to have me.

So here’s my ask on this anniversary.

Don’t thank a disabled person today (give us money). Go look at a door that you walk through without thinking about it, at work, your gym, your kid’s school, or your polling place. Ask yourself whether I could get through it. Then ask who decided that, when, and whether anybody’s checked since.

That’s the anniversary. A door, the decision behind it, and whether anyone’s looked at it lately.

Maybe rights are just temporary privileges.

I write this newsletter twice a week, on disability, healthcare, and the machinery underneath both. It’s free to read because paid subscribers keep it that way for everyone else.

For the ADA anniversary, annual subscriptions are 20% off through Friday, July 31 at 11:59pm ET. The discount applies automatically at this link.

Solidarity forever.

-Steve

Here’s the first thing I know: everybody’s dying, but most of you get to be coy about it. You can act surprised. You have the luxury of treating death like a rumor, something that happens to other people and will presumably get sorted out before it’s your turn. I don’t have that. I got the memo early, in writing, with a prognosis attached. Ullrich congenital muscular dystrophy doesn’t do subtlety. It hands you the syllabus on day one.

I’ve had a long time to think about this, and I want to tell you what I’ve learned over the years, as opposed to what you’re supposed to say.

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They called it the Capitol Crawl. Four months later, the Americans with Disabilities Act was signed into law.

There’s a part of the story that almost never gets told, and it’s the part that must be remembered this week.

One of the participants was an eight-year-old girl named Jennifer Keelan, who had cerebral palsy and said, when she started up the steps, “I’ll take all night if I have to.” Her photograph became the defining image of the whole protest and a lot of disabled activists were furious about that as it happened.

The editor of a disability magazine called The Disability Rag stated it as such: why would a movement trying to prove that disabled people are adults, not children, make its central image a child? Organizers had worried about it beforehand. They knew what a crawling kid would do to a viewer. It would move them and being moved is not the same as being convinced. A country that feels something about you is not the same as a country that owes you something long deserved.

They were right to worry. That image got sanded into the inspirational story of a brave little girl who wanted it badly enough. That’s how it gets taught, when it gets taught at all, and it’s a lie by omission, because the crawl wasn’t a feeling. It was a threat.

Sixty adults blocking the entrance to the People’s House with their bodies, in front of cameras is a hostage situation with better PR. The whole point was to make the building’s inaccessibility physically undeniable to the exact people who kept voting to ignore it. It worked, to whatever degree it worked, because it was confrontational. They crawled to make it impossible for a senator to walk past them and pretend the problem was theoretical.

So the fight over that photograph is the fight I’m still having every week, thirty-six years later. Do you see a citizen making a claim, or a person making you feel something? Because those two things get treated completely differently by a government. One gets rights while the other gets sympathy. Sympathy has a budget line, and budget lines get cut.

Which brings me to why this anniversary week hits different.

The people taking apart what those crawlers won are not doing it the way it was won. Nobody’s climbing anything. There’s no vote where a senator stands up and says disabled people should have less. It’s happening in interim final rules, reclassifications, six-month re-verification cycles, and definitions narrowed by a few words buried in a hundred-page document dropped on a Friday afternoon in June. It’s happening in language specifically engineered to be too boring to report on.

That’s calculated. You can’t crawl up the steps of a rule change. There’s no photograph of a documentation requirement. If you make the harm dull enough, nobody has to defend it, because nobody can see it. The people it’s happening to are too busy filling out the forms to organize.

The crawl worked because it was loud. The counterattack is designed to be silent.

Somebody has to make the boring stuff legible and direct to your inbox. That’s why I write this newsletter. I read the rules, rulings, and state budgets, I check every number against the primary source, and I tell you what’s actually in them, in language that isn’t built to make you stop reading. Then, I tell you what it looks like from the POV a body the rules are about.

Free posts here take apart the words people use on us. Paid posts go deeper, the essays only I can write, plus the healthcare guides that are genuinely useful, like the work requirements survival guide I put out last week, which is the kind of thing that saves somebody’s coverage if they read it in time.

Paying keeps this independent. It means I write what matters instead of what travels.

Here’s the offer. Through ADA anniversary week and the rest of the month, annual subscriptions are 20% off. It runs through Friday, July 31 at 11:59pm ET.

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They didn’t ask nicely and they didn’t wait to be given anything. Neither should we. The least I can do is keep the record.

Solidarity forever.

-Steve

Medicaid work requirements are here and already being enforced in some states right now. The rule says certain adults have to prove 80 hours a month of work, school, job training, community service, or a combination, and prove it on the state’s schedule, or lose coverage.

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That framing is the whole problem, so let me rip it apart.

An accommodation doesn’t give me an advantage. It puts me on the same starting line everyone else has already been standing on. A ramp doesn’t launch me ahead of you into the building. It gets me to the door you walked through without thinking about it. Extended time on a test for someone with a processing disability doesn’t hand them a better score, it removes a stopwatch that was measuring something the test was never supposed to measure. Captions don’t give a deaf person a bonus. They give them the audio you got for free.

Nobody calls a staircase an accommodation for people who can walk. It’s just there and just is. The building has a way in, and it happens to be built for your body, so it reads as neutral, normal, and how the world operates. The ramp is the thing that gets a label and it implies the ramp is extra. But, the stairs were an accommodation too. They just accommodated the majority, so nobody had to name them.

That’s the trick hiding in the word. The default already fits most people, so most people never notice it’s a choice. Then, when someone needs a different fit, we call it “special,” as if the original was handed down by nature instead of poured in concrete by somebody who wasn’t thinking about you.

Here’s where it gets personal and where I think a lot of people get quietly stuck.

There’s a shame that comes with asking. I feel it too, so I’m not lecturing from above. When you have to ask for something, whether it’s a ramp, seat, extra minute, or any kind of help, there’s a voice in the back of your head that says you’re being difficult. You’re the reason things are slower, more expensive, and more complicated. Everyone would breathe easier if you just needed less.

That voice is lying, and it’s worth naming who taught it to you. It’s the same instinct that treats my care as a cost instead of a right, and my access as a burden instead of a baseline. It wants disabled people small and apologetic, asking for as little as possible and thanking everyone for the scraps. A person who feels ashamed to ask is a person who will accept less, and accepting less is exactly what the whole system is designed to get us to do.

I’m going to say the thing I have to remind myself of, too. There’s no shame in asking for what you need. None. Needing help is not a character flaw, it’s the condition of being a person. You already rely on a hundred things you didn’t build and can’t see, like roads, plumbing, and the labor of people you’ll never meet. The only difference with an accommodation is that yours has a name and a form to fill out. That’s a paperwork distinction, not a moral one.

The Americans with Disabilities Act, which turns 36 this month, is built on exactly this idea. It didn’t magically invent special privileges for disabled people. The ADA made a legal promise that access is a right. The door has to work for us too and we shouldn’t have to depend on whether someone happens to feel generous that day to open it for us. It took the favor and forced it into a floor.

That’s what I want you to hold onto, whether you’re disabled or not, because everyone will feel a version of this eventually. Asking for what you need is refusing to disappear quietly to make other people comfortable. The ramp was never an advantage. It was always just the door, built for a body someone finally remembered to include.

Ask for the ramp, seat, and any help you may need. When someone acts like you’re getting a special deal, remember they’re standing on an accommodation so old and so common they forgot it was ever built for them.

Solidarity forever.

-Steve

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It’s called a quality-adjusted life year, or QALY, and it’s one of the main tools health economists use to decide whether keeping someone alive is a good deal. The idea is simple enough to explain at a dinner party and cold enough to quickly end one. You take a year of life and multiply it by a quality score between zero and one, where one is perfect health and zero is death. A healthy year counts as a full year, while a year lived in a body like mine counts as less.

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Disclaimer: If you want to be wheelchair-bound, we don’t kink shame in this house.

But, here’s what the word gets wrong. My chair isn’t what holds me down. I’m not bound to it by any stretch. It’s the thing that gives me range. Without it I’m stuck in a bed, but with it, I’m at a movie premiere, on a set, at a wedding, or in an airport losing my mind at a gate agent like everybody else. The chair is 300 pounds of freedom. “Bound” is what you feel when you look at it. It’s not what I feel when I use it.

So, where does the word come from? It’s imagining the inability to walk as the worst day of your life. You picture yourself suddenly immobile, file it under tragedy, and then you attach the tragedy to me. But I didn’t lose anything to get here because it’s my normal. You’re grieving a version of me that never existed, and then you’re handing me the grief to carry on my already messed up back.

That would be annoying but harmless if it stayed a word.

The same instinct that says “bound” also asks “why are we spending so much to keep him comfortable?” When you think of a disabled person as a tragedy in a chair, you think of the money that keeps us alive as a mercy, not a right. Mercy is the first thing to get cut, which is why disabled people are constantly told we should rely on charities and churches.

Here’s the part that connects the word to the year we’re having. My chair does nothing without the care around it. Someone has to get me in and out of it. That care is funded through Medicaid and home and community-based services, the thing that keeps disabled people in our own homes instead of institutions. Eighty-six percent of optional Medicaid spending goes to disabled people and older adults, which is exactly why states cut it first when they need to find money. Right now there are more than 700,000 people sitting on waiver waitlists, waiting years for the care that turns a chair into a life.

The word “bound” and the waitlist are the same idea wearing different clothes. Both of them say your freedom is optional and the chair is where you belong, so stop asking for the rest of it.

I don’t need you to swap one adjective for another. “Wheelchair user” is accurate and what I prefer, but I’m not writing this so you can feel good about your limited and outdated vocabulary. I’m saying all this because the way you picture my chair becomes the way you vote on my care. If you see a cage, you’ll fund a cage, barely, and only when someone shames you into it. If you see what I see, 300 pounds of freedom that only works when the care underneath it holds, then you understand why the fight over Medicaid is a fight over whether I get to leave my house.

The only thing I’m bound to is a hyper-capitalist society that treats people like me as a deficit and burden. Navigating a system where I can’t have more than $2,000 to remain on Medicaid and spending years attempting to get a new wheelchair makes it hard to get ahead. I’m not saying it’s not possible, it absolutely is. But, it’s objectively more difficult.

Call me a wheelchair user. Then, go learn which piece of this they’re cutting next, because it probably won’t be the piece that touches you first.

Maybe I’ll ask you to tie me to my wheelchair so I can feel something.

Solidarity forever.

-Steve

Thursday, for paid subscribers: The Math of a Life. They actually put a number on people like me. There’s a dollar figure buried in the models for what a year of my life is worth to the budget, and once you see it you can’t unsee how every cut gets justified. I ran their math, then I ran mine. They don’t match.

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I’m the healthcare guy. I signed up for the job because it found me, the way it finds a lot of disabled people who learn to fight their own denials and then can’t stop helping everyone else fight theirs. Somebody gets a letter they don’t understand, PCA hours get cut, or a kid ages out of a program nobody warned them about. At some point they remember the guy in the wheelchair who tells stupid jokes and is always posting about Medicaid, and they message me.

This year the messages changed. They used to come one at a time and spread out in the normal background hum of a broken system. Now they come in clusters. A new rule drops on a Tuesday and by Thursday I’ve got six people asking me the same terrified question in slightly different words. They never know it’s six but they do know it’s by design.

That design is the whole point of this essay.

A year ago, the cruelty started

Tomorrow is the one-year anniversary of H.R.1, or the One Big Beautiful Bill Act, being signed by President Trump. The timing was the message. A second Independence Day, except this one was about deciding who gets to be independent and who gets managed.

Here’s what it did in reality, verified against the Congressional Budget Office: the OBBBA enacted the largest cuts to Medicaid in the program’s history, roughly $1 trillion over ten years (CBO and KFF). The CBO projects 10 million more people uninsured by 2034 from the health provisions, about 7.5 million of them from the Medicaid and CHIP cuts alone. The single biggest driver is the work requirement, which on its own accounts for a $325 billion cut and millions of the coverage losses.

Secretary Kennedy keeps going on television to say there are no cuts to Medicaid, because total spending still rises over the decade. Everything rises over a decade. Rent rises the same way the cost of insulin rises (but not wages). That’s not a defense, it’s a magic trick. When the CBO says millions of people lose coverage, any reasonable person calls that a cut, especially the person losing the coverage.

They paired about a trillion dollars in healthcare cuts with about a trillion dollars in tax cuts weighted to the top. The money just moved off the bodies of sick people and onto the balance sheets of people who will never see the inside of a Medicaid office. A redistribution of wealth, if you will. Notice how they’ll never call this socialism.

Work requirements: a paperwork trap dressed up as a values argument

The centerpiece is the work requirement, and you have to understand why it’s so effective at hurting people.

The pitch is simple and it polls well: able-bodied adults should work for their benefits (gross). Except, more than nine in ten Medicaid enrollees are already working, in school, caregiving, or unable to work because of a disability or illness. The requirement doesn’t find freeloaders, because the freeloader is a myth. What it finds is paperwork.

Starting January 1, 2027, expansion enrollees have to prove 80 hours a month of work or qualifying activity, and re-prove it at every six-month eligibility check, up from every twelve months. The Urban Institute’s March 2026 projection is the number I keep sending people: between 4.9 and 10.1 million people will lose Medicaid coverage in 2028 from the work requirement and the new six-month checks. The study found that 19 to 37 percent of people who already work would lose coverage anyway, because they couldn’t document it to the system’s satisfaction. People doing exactly what the law demands, cut because a portal timed out or a pay stub didn’t upload.

As I write this, the fight is already in court. This week, Maryland and 24 other states along with Washington D.C. sued the administration over exactly this rule, and the reason is the fine print. The June guidance quietly narrowed “medically frail” so that a diagnosis is no longer enough. Now you have to prove a significant health condition AND that it significantly impairs your ability to work, which means a trip to a doctor for a special note. Maryland’s own analysis says 45 percent of its expansion population, roughly 150,000 people, could be disenrolled, and the state admits that’s probably an undercount. The doctors are supposed to write the notes that save people, except as one Harvard health economist put it, that’s not what they’re trained or paid to do, and primary care is already burning out. Meanwhile, states get penalized for approving too many people. So the incentive runs one direction: deny.

TV’s Dr. Mehmet Oz, who runs CMS now, says the rule "helps Americans build skills and independence through work, education, job training, or community service." I’m sure a stage four cancer patient would love to learn how to make an app in exchange for getting chemotherapy.

We already ran this experiment and it failed. Arkansas tried work requirements in 2018 and roughly 18,000 people lost coverage before a federal judge stopped it, with no rise in employment. Georgia built its version and reportedly spent close to five times more on administration and red tape than on actual care. This is the documented, repeatable result, and they wrote it into federal law anyway, knowing exactly what it does.

Nebraska went first under the new law, switching on enforcement May 1, 2026 with Montana and Arkansas following on July 1. The rest of the expansion states are next. On June 3, CMS published a 135-page interim final rule that, in the words of one patient advocate, significantly raises the bar for proving you’re medically frail. People in the middle of treatment now get the new hassle of proving their condition over and over, with any gap punished by losing their coverage. The exemption exists, but the burden of proving it is laid on the sickest people in the system, and every missed form is counted as a win for the budget.

Why this lands on disabled people no matter who they say they’re targeting

Here’s the part the architects are careful not to say out loud.

More than 86 percent of optional Medicaid spending goes to disabled people and older adults. When you cut Medicaid by a trillion dollars and tell states to find the savings, there’s no version of that math that spares us. We are the optional spending. The home care, personal aides, equipment, and therapies all sit in the category states are allowed to cut first.

And they always cut it first. The last time federal Medicaid funding dropped, between 2010 and 2012, every single state cut home and community-based services to some degree, and the waiting lists grew. We have the receipts on what happens, because it already happened.

Home and community-based services, HCBS, is the thing that keeps me out of an institution. It’s the aides and support that let me live in my home instead of a facility, work, have a life, and be the person I want to be. It’s also, in the cold language of Medicaid, optional. Already, before the OBBBA cuts even fully hit, more than 700,000 people are stuck on waiting lists for these waivers. Most of those lists are measured in years.

The bill pretends to address this with a shiny new HCBS waiver category. Here’s the reality, and it’s a dark one: the Center for American Progress ran the numbers and in its first year, the new funding covers HCBS for about 27 people per state. Twenty-seven in a country where the lists are hundreds of thousands deep. They put a shot of vodka next to a fire and called it a fire department.

The same machine, pointed at one group after another

If it were only the OBBBA, you could almost call it a budget fight. The bill was the engine, and over the past year I’ve watched them bolt it onto target after target, each time using the same method: bury the harm in a rule, form, or reclassification, so nobody has to stand up and defend the cruelty out loud. Proceduralize it and make it look like administration instead of a decision.

Walk the year with me.

SNAP, in my home state of New Jersey. The OBBBA’s food-aid work rules took effect and more than 26,000 New Jerseyans lost SNAP, all because of paperwork, not to actually being ineligible. Around 800,000 of my neighbors, one in eleven, rely on that program. Same trap, different benefit.

Tennessee, and this is the one that should make you lose sleep. In June, the state told around 400 families of critically ill and disabled immigrant children that if they stayed in the Children’s Special Services program past June 30, they’d be reported to a state immigration office that shares data with ICE. A law written for adults, signed in May, applied to children. You make the help so dangerous that the family declines it themselves, and then you get to say nobody was denied even though their kid died. That’s a human-rights violation masquerading as paperwork.

The integration mandate, the loaded gun. On June 18, a Justice Department legal opinion declared that the Olmstead integration mandate, the principle that says disabled people have the right to live in our own homes and communities instead of being warehoused in institutions, was never actually required by the ADA, and that the regulations enforcing it are unlawful. This is an opinion, not a repeal, so the regulations still stand. But, it’s an invitation to rescind them, a signal to HHS and DOJ that the door is open. They loaded the gun on the right to live at home. They didn’t fire it yet, but every good writer knows what happens when a gun is presented in Act I.

Bloomberg Law reported on June 23 that White House adviser Stephen Miller drove the memo, frustrated that DOJ was still reaching settlements to move people with mental illness out of institutions. The White House and DOJ deny he was involved, so hold it as reporting, not settled fact. But, the reporting connects the dots, because it ties the memo to Trump’s July 2025 executive order pushing cities and states to move homeless people into treatment centers. Read those two things together and the shape is unmistakable: the right to live at home and the push to commit unhoused and mentally ill people are the same policy, run by the same people, pointed at anyone the system would rather contain than support. The opinion offers no evidence that the right to live in your community caused any of the homelessness it claims to be solving.

Special education, handed to a man who pities us. This past month the administration moved the Office of Special Education Programs out of the Education Department and into HHS under Robert F. Kennedy Jr., the same man who has said on the record that autistic kids will “never hold a job, play baseball or go on a date.” Disability advocates, a Republican former education secretary, and even RFK Jr.’s cousin called it what it is: a return to the medical model, the idea that we’re patients to be treated rather than students to be taught and citizens to be included. They took the kids who learn differently and filed them under sickness.

Five different fronts operating as one method. Reclassify a right as a privilege, bury the privilege under paperwork, and let the paperwork do the killing so no human being has to sign their name to it.

Sounds like they were never rights to begin with.

The civil rights model, and the quiet trip back to the medical one

Step back far enough and the year has a shape.

For most of the last century, disabled people were seen as a medical problem. We were diagnoses and were managed, contained, institutionalized, and decided for. Then, the disability rights movement spent decades dragging the country toward a different idea: we’re citizens with the right to be included, live in our communities, and to be in the room. The ADA, signed July 26, 1990, was the legal spine of that idea. George H.W. Bush called it a second declaration of independence. The integration regulations they’re now calling unlawful were first published July 26, 1991, on the ADA’s first birthday.

Everything I just laid out is the country quietly reversing that. Not with a grand announcement, because a grand announcement could be fought. They’re doing this with rules, forms, and reclassifications. The civil rights model says we’re people with rights. The medical model says we’re problems with costs. This year was filled with trading the first for the second, one interim final rule at a time.

Here’s the warning that should worry everyone reading this who doesn’t have a disability yet. Most of you will. Disability is the one minority group anyone can join at any moment, on any ordinary afternoon, in a car, diagnosis or a fall. The system they’re building to manage us is the system that’ll be waiting for you.

This isn’t a disabled-people problem. The whole floor is sinking.

If you’ve read this far thinking it’s about somebody else, look at what’s happening to people who aren’t even on Medicaid.

Last month Gallup reported that, for the first time in five years, fewer than half of Americans, 49 percent, can reliably afford healthcare. That’s the lowest since they started measuring. Shockingly, that survey was taken in late 2025, before the enhanced ACA subsidies expired and before most of the OBBBA Medicaid provisions even hit. That 49 percent is not the bottom, it’s the number before the year I just described lands on people’s kitchen tables in the form of a loss-of-coverage letter.

The squeeze is already worse for exactly the people this bill targets next. Only 34 percent of adults with COPD and 38 percent of immunocompromised adults can reliably afford their care. Gallup’s own conclusion, in their flat researcher language, is that this leads to delayed care, worse outcomes, more medical debt, and more death. They’re describing the road we’re already on, before the worst of the cuts arrive.

When I tell you what’s coming for disabled people, understand I’m also telling you what’s coming for you. We’re just standing on the front lines on the beach.

What they’re counting on, and the one thing that beats it

Go back to my inbox. Six people, same week, same rule, each one certain they’re the only one.

That isolation is the strategy. The entire method I just walked you through is engineered to make sure we never see each other. The SNAP family in Newark doesn’t know about the HCBS family in Kentucky. The special-ed parent fighting RFK’s reorganization doesn’t know they’re fighting the same machine as the immigrant family in Tennessee. Divided into small enough pieces, every one of us loses to the paperwork, alone, quietly, and convinced it was personal.

They came for us in pieces because in pieces we lose. The math only changes when the pieces find each other.

That’s not a feel-good line to end on. It’s the actual structural counter to the actual strategy. Solidarity isn’t a mood. It’s the one thing their whole method is designed to prevent, which is exactly how you know it’s the thing that works. When the SNAP fight, Medicaid fight, special-ed fight, and the integration-mandate fight understand themselves as one fight, the silos stop working. When a nondisabled person who can’t afford insulin recognizes the disabled person losing home care as a neighbor and not a stranger, the isolation breaks.

Here’s what I’m asking, concretely, because vague calls to come together are useless and you deserve better than useless.

Learn the machine, not just your piece of it. If your fight is SNAP, learn the Medicaid one. If your fight is your kid’s IEP, learn the HCBS one. They’re the same fight and they want you to think they’re separate.

Check on the person who went quiet. The paperwork works by exhausting people into silence. Someone in your life got a letter this year and didn’t tell anyone. Ask.

Refuse the frame. Every time someone says “work requirements” like it’s about work, or “medically frail” like it’s about medicine, say the real thing out loud: it’s about who gets to keep their healthcare and who gets buried in forms until they give up. Remember, healthcare should never be conditional on employment.

Make the quiet loud. The whole method depends on nobody having to defend it in broad daylight. So drag it out of the shadows, share the story, name the rule, and make them say it to your face.

The ADA turns 36 this month. The country will throw it a party, the same month it dismantles what the ADA promised. I’m not interested in the party, even though I’ll still drink heavily. I’m interested in whether we can still do the thing that built the ADA in the first place, which was never charity or pity. It was disabled people and the people who loved them refusing to be sorted into manageable pieces.

My inbox will be full again next Tuesday. I’ll answer every message I can, the way I always do. But I can’t out-answer a machine built to isolate people one mailbox at a time. None of us can, alone. That’s the whole design, and the whole way out.

I say it to sign off everything I say here. Understand it. It’ll save lives.

Solidarity forever.

-Steve

Pride is a strange word to aim at a body like mine.

The word “pride” shows up everywhere in disability spaces now, on the flag, in the month, in hashtags, and a lot of the time it gets used like it’s easy. It feels like a parade you just show up to. Be proud! Of what, exactly? That’s the question the slogan skips, and it’s the only question that matters to me.

My physical body does less every year. I am, by every measure the world uses, the thing it spends enormous energy trying to prevent, fix, cure, or quietly cut from the budget. When somebody hands me the word “pride” and points it at this, I need it to mean something more honest than a feeling.

Let me tell you what it doesn’t mean first, because the fake versions are everywhere and they’re exhausting.

Disability pride isn’t pretending the hard parts don’t exist. I’m not proud that I can’t scratch my own nose at 3 a.m. I’m not going to roll on a stage and tell you my disability is always a gift, because it isn’t. The people who need to hear that aren’t in the audience, they’re in the budget office. Toxic positivity is just inspiration porn wearing a Pride shirt with the accessible parking logo.

It’s not the costume version either. Pride isn’t celebrating disability like it’s a quirky accessory, a fun fact about me, or a brand. I didn’t choose this and I can’t return it. Treating it like a vibe is its own kind of erasure, just a friendlier one.

What’s left, when you strip out the lie and the costume?

This is the part I had to find the hard way. Disability pride, the real version, is the refusal of shame, and it’s heavier than it sounds.

Shame is the default setting. The world hands it to you early and constantly. Every stare, “what’s wrong with him,” buildings you can’t get into, medical forms that call you a defect, doctors who talk to the person accompanying you instead of you, all of it carries the same quiet message: you’re a problem, and the problem is you. You absorb that before you have words for it. Most disabled kids are fluent in shame before they hit puberty.

Pride is the decision to put that shame down. Just to set it on the floor and refuse to carry it anymore. To look at a body the world calls broken and decide it is, in fact, just my body. It’s the only one I get, and it’s gotten me to 35 and into rooms I was told I’d never reach.

That’s a daily act of resistance. Sometimes I’m great at it and sometimes the shame is right there waiting and I have to put it down again. Pride isn’t a state you arrive at, it’s a thing you do, over and over, usually before coffee.

And here’s where I have to turn, because this year I can’t write about pride as if it’s only personal.

This July, the same month the disability flags go up (barely), the country will also celebrate the 36th anniversary of the Americans with Disabilities Act. There will be statements, politicians posting black-and-white photos of the signing, and it will happen in the exact same month that this administration is dismantling what that law promised. It’s happening through Medicaid work requirements that strip coverage by paperwork, a Justice Department opinion inviting states to put us back in institutions, and cuts that impact hardest on the home care that lets people like me live outside a facility at all.

They’ll wave the ADA like a trophy in one hand and gut it with the other, and they’re counting on the celebration to cover the sound.

Pride, this year, can’t just be a feeling I sort out in private. The world is busy reattaching the shame I worked so hard to put down. It’s telling me again, through policy instead of playground taunts, that I’m a cost, a burden, a line item, and a problem to be managed. It’s the medical model disguised as austerity. The only appropriate response to a government trying to shame you back into the institution is to refuse, loudly, on the record, and publicly.

That’s what the LGBTQ folks understood when they turned a feeling into a march. Pride stopped being something you felt and became something you did where everyone could see it, specifically because the people in power wanted you ashamed and quiet. Pride was the refusal and visibility was the point.

That’s the version I’m taking into July. Not pride as a costume, slogan, or a comforting lie about how it’s all secretly a blessing. Pride as the flat refusal to be ashamed of the exact thing they’re trying to cut from the budget and eradicate entirely.

They want us quiet, grateful, and out of sight. The most defiant thing a disabled person can do this month is take up space and refuse to apologize for the body doing it.

The flags change tomorrow. The fight underneath them doesn’t.

Solidarity forever.

-Steve

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I want to explain what that phrase actually means, because almost no one outside the disability world understands it, and a lot of people inside it have been told to think of it as just how things work. It’s a policy choice disguised as a logistics problem, and once you see the trick, you can’t unsee it.

So here’s how Medicaid home care waitlists actually work, why hundreds of thousands of people are stuck on them, and why the word “list” is doing a lot of quiet lying.

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I get called brave a lot. Brave for going to the store, being on a date, having a job, and ordering at a restaurant like a man who wants chicken tendies. People say it the way you’d congratulate a toddler for using the toilet. Look at you.

The thing about being called brave for doing nothing?

It tells you exactly what they expected of you, which is… nothing. You don’t call someone brave for clearing a bar you assumed they’d clear. You call them brave when they did something you figured was beyond them. Every “you’re so brave” is just a sentence with the first half cut off. The full version is “I assumed someone like you would be at home, in the dark, waiting to die, so the fact that you’re buying American Spirit’s is frankly heroic and worthy of a medal.”

They think they’re handing me a compliment when they’re putting their assumptions in a box with a bow on top.

What brave is supposed to mean

Bravery is supposed to cost something. You’re brave when you run into the building everyone’s running out of or when you say the truth that’s going to get you fired. Brave is a choice to do the hard thing when the easy thing is right in front of you.

I didn’t choose this body and I didn’t run into anything because I’ve never been able to. I woke up with a craving for a coffee and cigarette so I went out and got it. The only thing I overcame was the front door. Calling that brave empties the word out completely. If existing while disabled is brave, then it means nothing, because I’ve been doing it involuntarily since birth along with every other disabled person you’ve ever clocked and quietly admired for being upright.

You’ve taken a word that’s supposed to mean “did the hard thing on purpose” and used it to mean “is alive in front of me.” Those are not the same and you know they’re not, because nobody calls you brave for going to Walgreens.

The part that isn’t funny

The real cost of being called brave is that it closes the conversation before it starts.

When you’re brave just for showing up, there’s nowhere left to go. You’re already at the top of the mountain. You can’t be good at your job, because being there at all was the achievement. You’re not allowed to be funny, smart, talented, or an actual pain in the ass on a bad day, because the story already has its ending and the ending is “and yet, he persists.” I become a finished inspirational object before I’ve opened my small mouth and said a word. The brave thing flattens me into a moral the same way the pity face does. Different costume, same job, and both of them decide who I am so they don’t have to find out.

It’s hard to argue with, because it’s dressed as kindness. If I tell you that “you’re so brave” hits like an insult, I sound ungrateful. So, most disabled people just take it. We let you feel good by doing the labor of absorbing your low expectations and handing back a smile. Correcting you is somehow ruder than you telling a stranger in a Walgreens that his continued existence is an act of valor.

What I’d actually take

Call me brave for the things I chose. I put my body on a TV show where millions of people who’ve never sat next to someone like me are going to have to look. I have no problem telling a room full of medical students that the system they’re about to enter is built to wear people like me down. Call me brave for writing the post about wanting to die and hitting publish.

Those cost me something. Those I’ll take.

Buying cigarettes so I can feel something isn’t brave. That’s just Tuesday. The fact that you can’t tell the difference is the whole problem.

If you want to be useful, save the word for when I’ve earned it. The rest of the time, I’m just being a person. Try seeing that one instead. It’s the harder thing to do, and you know what they call people who do the harder thing.

Now, be brave and subscribe to my paid tier. I need another pack.

Solidarity forever.

-Steve

On June 1, the Centers for Medicare and Medicaid Services announced a rule that explains how the exemption will actually work and now we know it’s a trap.

They built a door marked “for sick people” and then made it almost impossible to open. That was always the plan.

What “Medically Frail” Was Supposed to Mean

The entire defense of Medicaid work requirements rests on one claim: the disabled and chronically ill will be protected. Every time an advocate pointed out that work requirements would strip coverage from sick people, the answer was the same. There’s an exemption and medically frail individuals don’t have to meet the requirement.

It sounds reasonable if you don’t know how any of this works or don’t recognize the pattern of this current presidential administration. Of course we wouldn’t make a cancer patient prove they’re job hunting. The exemption is what let politicians vote for this and still claim they protected vulnerable people.

The whole thing depended on that exemption being real and reachable. It’s neither.

What the Rule Actually Does

The rule makes the definition of “medically frail” very broad. CMS set a single federal definition covering five categories: people who are blind or disabled, people with a substance use disorder, people with a disabling mental disorder, people with a physical, intellectual, or developmental disability that significantly impairs daily living, and people with a serious or complex medical condition. CMS even refused to let states shrink that list. On paper, that sounds like protection.

But, the trap is what you have to do to prove it, and keep proving it.

Being medically frail doesn’t exempt you automatically. You have to be identified as medically frail, verified, and then re-verified. The rule requires states to confirm your frailty status at least once every 12 months, and it lets them do it more often, as often as every renewal. After a short grace period, the easy ways of proving it start to close, and states move toward demanding documentation. A disabled person won’t clear the bar once and walk through the door. They have to stand in front of it, prove they belong there, then prove it again, and again, on whatever schedule their state sets, forever.

CMS told states it will audit them for approving too many people as medically frail. If a state’s frailty approvals look high “with little to no support,” the federal government flags it through its error-measurement program. The oversight structure was built to punish states for being generous and rewards them for being stingy. The incentive is to hurt and destabilize sick people.

How the Trap Works

Work requirements don’t kick people off Medicaid by telling them they’re ineligible. They remove recipients through extensive paperwork. You have to document your work hours, or document your exemption, on a fixed schedule, in a convoluted format, through an unreliable system, before a deadline. Miss a step and you’re out, even if you qualified the entire time.

The definition is broad, but breadth on paper means nothing if the proof is hard. A disabled person now has to identify themselves as frail, submit the documentation to verify it, then re-submit that documentation every 12 months, possibly more often, while their state operates under a federal incentive to keep approvals down. Every one of those steps is a place to lose someone. A missed form, a portal that went down, a notice sent to an old address, or a state that quietly decides the documentation isn’t ‘sufficient’ this cycle. Each one is a way out the door.

We know this is how it works because Arkansas already ran the experiment in 2018 and it ended with more than 18,000 people losing coverage in only seven months. The overwhelming majority of them were already working or already qualified for an exemption. They lost their coverage because they couldn’t get the paperwork through the maze in time.

The promise was “sick people are exempt.” The reality has evolved to “sick people may apply for an exemption through a process designed to exhaust them, against a standard designed to exclude them, with their healthcare as the penalty for failure.”

Why They Do It This Way

They do it like this because they can’t do it in good faith.

No politician can stand up and say they want to take healthcare away from cancer patients and disabled people because the public won’t accept it stated plainly. So, they build a structure that produces the same result through attrition, then they point at the exemption on paper and say the vulnerable are protected.

It’s the same playbook across every move this administration has made on disability and healthcare in the last 18 months. Work requirements that don’t increase work and only remove people from coverage, freezing asset limits that haven’t been updated since 1989 that keep disabled people in poverty, more frequent eligibility checks designed to catch people in a missed deadline, a lawsuit to gut the integration mandate that lets disabled people live at home, and now an exemption for sick people that sick people can’t actually get.

The strategy is always the same by making the cruelty procedural. Bury it in a 135-page rule and let the paperwork do what no honest vote could. When the coverage losses come, blame the people who couldn’t navigate the system you rigged against them.

What to Do

The rule is out, but the fight isn’t over. The federal definition is fixed, but your state decides how the proving works: how often you have to re-verify, what documentation they demand, and whether their system is usable or a maze. That’s where the cruelty gets dialed up or down, and that’s the fight you can win locally.

If you’re disabled or chronically ill, or you know someone who is, this is the moment to find out how your state plans to handle verification, how often you’ll have to re-prove your status, and what they’ll demand as proof, and to make noise about it before those rules get locked in. The federal definition is set, but how survivable the proving process is gets decided at the state level. That’s a fight you can actually win locally even when you can’t win it in Washington.

Call your state Medicaid office, state representatives, and find disability rights organizations in your state and ask them what they’re tracking and how to help. The implementation deadline is January 1, 2027, which sounds far away but isn’t, because the definitions get written long before the deadline.

If you’ve already gotten a notice, or you know the exemption process is coming for you, document everything now. Gather every diagnosis and piece of proof that you are exactly who the exemption was supposedly built for. Don’t wait for the system to ask. The people who survive this will be the ones who started building their paper trail before the maze opened.

They built a door marked “for sick people” and made it nearly impossible to open. So, we do what disabled people have always done when they rig the building against us.

We find another way in, we hold the door for each other, and we make so much noise that they can’t pretend they didn’t hear us.

Of course... there should be no medical exemption because there should be no work requirements because healthcare shouldn’t be means tested. I’m just the messenger.

Solidarity forever.

-Steve

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Differently abled, handicapable, special needs, diversely functional, or even person of determination, which is an actual term the United Arab Emirates adopted and makes me sound like a Pixar character. People will reach for any of these before they’ll say the word “disabled,” and they think they’re being kind and sensitive.

Instead, it’s weird and uncomfortable, and they’re asking me to manage their discomfort by participating in a euphemism that exists entirely for their benefit.

I’m disabled. Say it. It’s not a slur or a bad word. It’s nothing you need to soften, dress up, or tiptoe around. It’s a description of my relationship to a world that wasn’t built for my body. That’s all it has ever been.

Where the Euphemisms Come From

Every one of these soft words comes from the same place: the belief that disability is so terrible, tragic, and unspeakable that the word for it has to be sanded down before it’s safe to say out loud.

When you call me “differently abled,” you’re telling me that the actual word for what I am is too ugly to use. You believe that “disabled” is an insult, which means you think being disabled is insulting. Therefore, there’s something wrong with being me that we both have to pretend around.

The discomfort is wearing kindness as a disguise.

“Differently abled” is the worst offender because it’s also a lie. There are things I can’t do, like walk, but, pretending I have a secret set of alternative abilities that balance the ledger is insulting in the other direction. It denies my reality to make you feel better. I don’t need you to imagine I have hidden powers. You really should accept that I have real limitations and help me build a world that accounts for them.

“Special” Is the Most Condescending Word in the Language

Special needs, special education, Special olympics. The word “special” has been wrapped around disabled people, disabled kids especially, for decades and it sounds gentle until you look at what it’s actually doing.

My needs aren’t special. I need to get into the building, I need to use the bathroom, and I need transportation that fits my body. These are human needs that the world decided not to plan for, and then labeled “special” so the failure to plan would sound like a category of person instead of a choice the world made.

“Special education” is the sharpest example. For a lot of disabled kids, “special education” has meant segregation. They’re put in a separate room or building with a lower set of expectations. It made putting disabled kids somewhere else sound like giving them something extra. It was less, with a nicer label.

When you call a disabled person’s needs special, you’re marking them as other. You’re saying their needs are a special case instead of a normal part of human variation that any decent system would have accounted for from the start.

The Euphemism Treadmill

Soft language never stops needing replacement.

Handicapped became outdated, so we got disabled. Disabled made people uncomfortable, so we got differently abled. Differently abled started sounding patronizing, so we got special needs. Special needs got mocked, so now there’s handicapable and person of determination and whatever nonsense coming next.

This is the euphemism treadmill and it never ends, because the problem was never the word. The real issue is the discomfort with the thing the word describes. You can change the word as many times as you want. As long as you’re uncomfortable with disabled people, every new word will eventually absorb that discomfort and need replacing too.

The disability community largely settled this years ago. Most disabled people, disability advocates, and disability organizations use the word disabled as identity-first language. I’m not going to quarantine it into a prepositional phrase to make you comfortable.

Some people prefer person-first language, and that’s their call to make about themselves. The point isn’t that there’s one correct word everyone must use, it’s that disabled people get to decide, and the euphemisms were never our idea. They were invented for us, by people who couldn’t sit with the plain word.

Just Say Disabled

I’m not asking you to be careful. Just be normal.

When you meet a disabled person, you don’t have to scan a dictionary for the safest possible term to perform sensitivity. Just say the word “disabled" the way you’d say tall, left-handed, or any other descriptive fact about a person’s body. That’s all it is.

The discomfort you feel reaching for a softer word is worth examining. It’s not protecting me because I’m fine with what I am. The inconvenience is yours, and the euphemism is how you hand it to me to hold.

I’m disabled. It’s far from the saddest thing about me, which is having to talk about this instead of healthcare. It’s just true, and I’d like to live in a world that can say so without flinching.

Solidarity forever.

-Steve