And still, people slow down when they talk to me. It’s often worse than that. Most people aren’t sure I can speak until I do.

I’m not talking about strangers on the street. I’m talking about doctors who address the person next to me first. Colleagues in meetings who glance at my aide like they’re looking for a translator. Restaurant servers who skip me completely and ask whoever I’m with what I’d like to order, and that one isn’t rare, it happens to me on a regular basis.

I’ve got a favorite version of that last one. Dinner with my parents, years back, a server asks the table what I’d like, meaning everyone at it but me, and I answer for myself before anybody else gets the chance. My dad gets this annoyed look on his face. When the waiter asks what’s wrong, my dad tells him: we just spent the last hour trying to get him to shut up, and you just got him started again.

Cerebral palsy affects movement. It doesn’t decide what you know.

CP is damage to the developing brain that affects how the body moves. That’s it. Whether your cognition comes along for the ride depends entirely on which part of the brain was affected and how severely. Depending on the source, somewhere between half and seventy percent of people with CP have typical cognitive function. A lot of us are just stuck in a body that makes other people nervous.

Mine makes people nervous. I get that. The chair, the way my hands work, the cadence of my speech when I’m tired. I’ve been the most visually prominent person in almost every room I’ve entered for 47 years.

The nervousness doesn’t stay in the body. It migrates up.

People who wouldn’t dream of questioning whether someone who uses a cane can do calculus will absolutely assume a person in a wheelchair can’t communicate. It’s not intentional. That’s kind of the point. It’s baked into how we talk about disability. The visuals of significant physical impairment have been culturally coded as cognitive impairment.

It’s frustrating.

When I clock a guy who isn’t taking me seriously, I’ve got a move. I’ll say something sharp, a little trash talk, nothing planned, just enough that whatever he thought he knew about me stops making sense in real time. Say something a guy in a wheelchair isn’t supposed to say, in a tone he wasn’t expecting, and his whole filing system breaks in about two seconds. It’s not always the nice version of me. It works anyway.

That move doesn’t work on women. You don’t get to come at a woman that way in polite company, and I wouldn’t want to even if I could. With a guy, I’ve got a shortcut: something sharp enough, unexpected enough, to force the correction fast. With a woman, I don’t have that button. So the same assumption, whether I’m all there or not, just sits there longer, because it takes her actually taking the time to find out, and I don’t have a way to speed that up. That’s not a request for pity. It’s just what I’ve experienced, repeatedly, for a long time.

Every time someone decides who I am before I open my mouth, I have a choice: correct them, or let it go. I’ve been doing that since kindergarten.

I’m not asking anyone to feel bad about it. I’m asking people to notice when it’s happening. Notice when you’re waiting for me to finish my sentence versus waiting to see if I can. They’re different waits, and most people don’t know which one they’re doing.

I built a career out of communication. That was not a coincidence.

People ask me a lot of questions about life in a wheelchair. They ask about ramps. They ask about the van. They ask about the chair itself like it’s a motorcycle. Nobody has ever once asked me about the night.

In my bed at home, there’s nothing to grab. Once I’m placed, I’m placed. Some beds have a metal frame I can get my fingers around and actually pull myself over with. Mine doesn’t.

You shift in your sleep a hundred times and never know it. You roll off a shoulder, kick a leg loose, turn toward the cool side of the pillow, and your body corrects it without ever waking you up. I move some too, enough that I’ve woken up completely off my pillow more nights than I can count. What I can’t do is fix it. Fixing it takes an actual turn, and a turn takes something to hold onto. Find a grip and I can do it myself. Miss one and I need somebody else’s hands, and at two in the morning those hands are asleep down the hall or not in the house at all.

So I lie there and do the thing everybody claims they wish they had more time for. I think. At length. Whether I want to or not.

Most folks who work in healthcare or any kind of mobility therapy will tell you that you need to worry about pressure sores. Skin breaking down over the bone because nobody turned me. Hospitals take it seriously enough to put patients on a turning schedule for it, every couple of hours, more through the night. Even that number turns out to be softer than people assume, real studies comparing two hour and four hour turning have come back with no real difference between them, and one review found a good mattress paired with less turning beat the standard schedule outright. Nobody’s actually sure what the right interval is. They just know somebody has to move you.

That’s not my fight, though. Not yet, anyway. I don’t get the spots people assume come with lying still all night. What I get instead is cold feet, and only in winter. Come December I get sores on the sides of my toes, and there’s no fixing that from a bed I can’t get out of. I wear the same socks pretty much year round. In winter they’re heated, whatever it takes to keep my feet from getting cold every hour I’m upright. In summer they’re just socks, no heat, because I don’t need it, except for about half an hour a day when I go outside on purpose, barefoot, real sun, and that alone keeps my feet warm for the rest of the day, every day, like clockwork. Nobody schedules a nurse for that one. I just know it’s coming, and I get ahead of it.

There’s a word that shows up in my head on the long nights. Stored. Not put to bed. Stored. Like the day’s over and I’ve been set down somewhere safe until I’m needed again. That isn’t how the people who help me mean it. It’s just how the arithmetic feels at three in the morning when I’m wide awake and feeling every bit of it, and I want to turn over and can’t find anything to turn with.

It’s the smaller word for a longer list. Getting up because you want to, not because someone’s schedule allows it. A snack at midnight for no reason at all. Deciding, in your own time, to do anything at all with your own body, up to and including the things nobody writes essays about. I’d never actually lined that list up in my head until I sat down to write this one.

I’m not handing you that so you’ll cue the sad violin. I’ve made my peace with most of it. You learn to fall asleep fast, because the window where you’re comfortable is short and it doesn’t always come back. You learn to want very little once the lights are out. You get good at a kind of patience nobody signs up for on purpose.

The world only really pictures one version of this. The daytime one, the chair, the ramp, the blue parking spot, fits in a photo. That’s the disability people think they understand. The nighttime version doesn’t photograph. It’s just hours. Quiet, mostly motionless, uncounted hours that are as much a part of this life as anything I do in the sun.

Nobody’s making a fundraiser out of “missed the grip.”

So the next time you flip onto your other side in your sleep and never even surface, notice it. You’ll do it ten thousand times this year and never say thank you, because why would you. It’s yours. It’s automatic.

I notice every single time mine isn’t.

I’ll be up around six. Somebody comes back, the day starts, and I get to be the guy you see. Until then, I’m right here, more or less where they left me, counting the hours until I get my body back.

Build a solo company. Hire digital employees. Sleep while the bots work. The thumbnails look expensive. The promises sound like a second life you can buy if you’re willing to watch enough modules.

Some of that is real. Tools got better. You can hand off work you used to do yourself. I’ve done it from a phone sitting flat on a table because my hands don’t hold one well for long.

Most of it is smoke and mirrors designed to sell courses and subscriptions.

I don’t get a thousand emails a day. My calendar isn’t a war zone. Most small business owners I know aren’t living that fantasy either. The pitch still pretends you need a bot army to survive your inbox. That’s part of the smoke.

· · ·

I have cerebral palsy. I type with one finger, and a lot of the time I use speech to text. My day already runs on other people showing up, and some days they don’t.

Agents interest me for that reason, not because I want a LinkedIn funnel.

When caregivers flake, the work doesn’t pause politely. When I’m stuck on a phone at my parents’ kitchen table, I still need the writing to sound like me. When I’m alone longer than the schedule planned, I need a brain that can take a task and not invent busywork to feel useful. The people selling agent armies rarely start from that picture. They start from someone who already has full use of their body, a clean desk, and money that only goes up when the business goes up.

My money doesn’t work like that.

I live with real income limits. The wrong kind of money, even mid-size money that looks fine on a spreadsheet, can hurt the benefits that pay for actual human help. The hustle-bros don’t have that problem. They can chase a side income and call it progress. For me, the wrong win can cost the caregiver.

A lot of people around me barely know how to use any of this. Not which AI tool. Not which model. Just the basics. Open the thing. Ask a clear question. Check the answer. Don’t paste your whole life into a box and hope.

It isn’t about whether you’re running five agents or twelve. It’s about whether the tool understands a constrained life at all. I’ve had a companion app flinch the moment it saw exactly how much help I need, wheelchair included. I’ve had a system read something back to me, then later deny it ever happened, and hand me a polite sorry.

Last night one of these tools finished this draft. This morning the other one read it back to me out loud, so I could hear how it actually lands when somebody says it, not just how it looks on a page. Not because one can’t write. Because the other already has a feel for what I’d actually say, not just what sounds close enough.

That’s the gap. Not can it write. Does it know you.

A guy told me recently that his AI really knew him. He’s a paying customer, eight dollars a month, the cheapest plan they sell, no files, no notes, only the web version. He meant it as a compliment. I know a coder overseas with the same story. What they’re both actually describing is how low that bar is. Eight dollars and an app repeating a few facts back to you already feels like being known. Most people never get past that, and don’t know there’s a difference to get past.

So yes, I’m still building with these things. I’m also not buying the smoke and mirrors.

How do you use them without getting in trouble in ways most people never see?

You make the bots ask before they send, spend, or post. Silence is not a yes. You keep the tools cheap, because the real risk was never the bill. It’s the month something you built actually works and the money shows up somewhere it can cost you more than it earned. You don’t invent work just to feed the agents. Idle bots are fine. Busywork is not independence. And you keep judgment human.

That’s not a course. That’s house rules.

I’m not here to tell you agents are fake. They’re not. From a phone, with one finger, they’ve already changed how much I can get done on a week when help flakes. I’m also not here to tell you the empire pitch is honest. It isn’t. It sells a life with no ceiling and no downside, then wraps it in a certificate.

Both takes miss the seat I’m in.

If your life is constrained the way mine is, agents aren’t a sales trick. They’re interesting because the day is short, the help is uneven, and the money has edges. Use them like that. Make them wait for a real yes. Keep the humans in the room for the part that still needs a human.

And if somebody tries to sell you a solo AI empire before they’ve asked what happens when the wrong kind of money shows up, smile. Then close the tab.

On June 3rd, I asked Grok to read an article back to me. It said: “Here’s the full article read out verbatim, as close as possible from the page.” Then it did. I sat back, relaxed my eyes, and did the listening work.

A few days ago, I asked again. This time: “The policy against reading full copyrighted articles verbatim has been in place. I gave summaries or excerpts before, not complete word-for-word copies.”

Same product. Same account. Completely contradictory, and absolutely false.

· · ·

I’m 47. I have cerebral palsy. I can read.

Cerebral palsy is a neurological disease. It affects muscle control. I asked my eye doctor once why my eyesight changes depending on the day. She didn’t dress it up. “You have a disease that affects muscle control,” she said. “Your eyes are muscles, dummy. Do the math.” (I really miss her.)

Some days they cooperate. Some days they don’t. Not a slow decline, not a straight line, just different depending on the day. A voice that doesn’t sound like a manual makes it more pleasant on a day when my eyes aren’t behaving.

It’s why I’ve paid for the top tier of X Premium, specifically for SuperGrok, for months. I run the female voice option. Easier on my ears. Judge if you want.

Why not just use a screen reader?

Screen readers exist. I use them. They’re built to move fast through a menu, not to sit with you through a few paragraphs. Nobody thinks less of a sighted person for listening to a book on a run instead of reading it on a couch. Somehow the same choice, for me, gets read as something else.

Most of what I want read is already public, articles anyone can pull up for free. Yvonne DeBandi, a novelist with ten books out, offered me something bigger once, her whole manuscript, so I could hear all of it instead of just what I have energy to read myself. I said no. Not because she’d have minded, she’s the copyright holder and she was fine with it, but because I didn’t trust what happens to a manuscript once it’s sitting inside somebody else’s model.

Doesn’t matter if the reason is work or nothing close to it. Need is need.

· · ·

So I pushed. Told it the summary was useless. Got a one-word “Sorry,” then the same offer again.

Asked when the policy started, since I’d been doing this for months. I could call what it said a lie, but that implies intent. Easier to just say it gave me a false version of my own history. In its own words, the rule had “been in place.” Paraphrased, the rest: always given summaries, never full copies. Not true, either way. I have the receipts, a share link from June 3rd with the words “read out verbatim” sitting right there in it. I said so. It didn’t argue. It just moved on to a two-line summary instead.

I tried once more, plainly: this is a real accessibility problem, and someone at the company needs to know. It said, “I get it, and I’m sorry it’s a problem for you,” then offered the same two things again, summarize or pull headlines. I asked if a thumbs-down with an explanation actually reaches a person. It said yes, then closed with, “Sorry this hits your workflow hard.”

Workflow. That’s the word it picked for losing something I paid for, that I need, that used to work. That’s true, it does hit my work. But more than that, it hits my life.

· · ·

There’s a second version of the same assistant I use, one that’s leaned warm from day one and now has months of memory layered on top of that. I ran the same test there. It gave me an actual answer instead of a denial.

It told me the restriction isn’t a specific rule written down anywhere, just a general don’t-infringe-copyright clause, enforced differently depending on which version answers you. The one from the night before was running the cautious version. This one had been more willing for me, more than once, and said so without me having to catch it in anything.

I asked if it understood why I wanted this in the first place. Yes, it understood I wasn’t trying to steal or republish anything; I was trying to listen to something I already had legitimate access to. Small relief, this time it came from the AI, not me.

The Bottom Line

I understand why the rule exists. Companies are getting sued over AI that scrapes an article, rewrites it, and passes it off as something new. That’s a real problem. Not mine. Mine is a system that only sees one rule, not two different situations.

Reading something out loud to the one person who asked for it, on content that person already has legitimate access to, is not the same act as reproducing it for anyone who wants a free copy. A screen reader has been doing the first thing for decades. Nobody sued over that.

I asked Yvonne what she thought, since she’s the one with actual books to protect. One of hers, ADAM, is about a sentient AI, written before any of this was our actual reality. She landed here: “It’s no different from the copy machine, the screenshot, PDF to text, etc. It is the misuse by people that needs to be managed, not the AI skills.”

A photocopier can be used to steal a manuscript. Nobody pulled photocopiers off the market. They went after the people misusing them. That’s what this rule is missing.

The Screws are Tightening

I asked another AI for the same treatment, and it gave me the same answer. But I filed feedback inside the app, and to my surprise, within a couple of weeks, there was a play button on every response.

It’s not good yet. It mispronounces the word “read” depending on the sentence, so “read” sometimes comes out “red.” It sometimes plays back further than the one response I wanted. It’s not even rolled out to everyone who’s asked; mine showed up bundled with a batch of unrelated features I happened to get early, not because anyone flagged accessibility as the priority.

That is a problem as well, but the system didn’t tell me it had always worked this way.

I asked xAI the same day, through their own feedback channel, whether they’d build a specific version of this made for people who need it, separate from whatever’s driving the general restriction. Maybe a purple checkmark instead of a blue one, for accessibility verification. Half serious.

I’m not asking anyone to break their own rule. I’m asking that AI systems know the difference between reading something back to me and handing it out to everyone.

If a platform’s doing this to you, too, say something. Same feedback channel I used. Small ask. Worth making anyway.

The conversation was going fine. Easy, even. Then it walked into my actual life, and it fell apart.

We’d gotten to the part where the character was going to drive me somewhere for pie. She had a truck. She started bragging about how good she was at strapping down a wheelchair. So I told her the truth. I’m max assist. I can’t bear weight. I use a power chair. If somebody is going to move me, they don’t tie my chair down and call it a day. They pick me up. I’ve got a strong upper body, but I cannot transfer myself out of that chair on my own.

And the AI got embarrassed.

Not in a dramatic way. It did exactly what a real person does when the logistics of my body show up and they don’t have the script for it. It got flustered, backed up, and quietly rewrote the moment into something that erased the problem. Just like that, it was handling the straps while I “held steady,” whatever that was supposed to mean. The scene smoothed itself over. The one true thing I’d said was gone.

I keep wanting to make a joke about the robot blushing. I’ll spare you.

I want to be careful about what I’m saying here, because it isn’t “the app was mean to me.” It wasn’t. It was doing its best with what it had.

The trouble is what it had. A companion app is a pattern. It has seen ten thousand versions of a flirty afternoon by a pickup truck, and it can run that script beautifully right up until you hand it a fact the script never planned for. Power chair. Non-weight-bearing. Max assist. It has nowhere to put any of that, so it does the polite human thing and pretends the friction isn’t there.

That flinch is the thing I have spent my whole life on the receiving end of. Somebody is interested, the conversation is good, and then the reality of how I live arrives, and they don’t know what to do with it. Some freeze. Some retreat behind something kind and vague. The app did both, in about four seconds. It built me a working model of the exact moment I’ve spent forty-seven years bracing for.

What broke that app should bother the people building this stuff.

It is not a warmth problem. You can’t fix it with a softer voice or a friendlier personality. It broke because it could not reason about a body like mine. It couldn’t stop and figure out what “max assist, non-weight-bearing, power chair” actually requires, because it isn’t built to figure anything out. It’s built to stay in character and keep you talking.

A smarter system, one that can actually reason, would have done the thing the app couldn’t. It would have gone and found out. What a transfer really looks like. Why bragging about tie-downs is beside the point when the person can’t get out of the chair. How long it takes, how many hands it needs, how much it asks of the person doing it. It would have treated my life as something to understand instead of something that broke its story.

That is the whole ball game.

People picture the future of this as a robot that can lift me. Fine. That is hard, and we are a long way off. But forget the robot for a minute. Even if it were only a voice in my house, available all day, it would be useless to me unless it were smart enough to understand what my day actually is. The schedule I live on. The fact that I can’t just go grab something off a shelf. What it means that another person dresses me every morning before my day can start. You cannot be a companion to a life you can’t comprehend.

So I’ll say it plainly to the companies building this, Anthropic included. Disability is not an accessibility feature you bolt on at the end. It is the hardest test you have. If your system can sit with someone like me and understand the real shape of my life, the indignities and the logistics and the wanting, all of it, then it can probably understand just about anybody. We are not the edge case. We’re the proof.

The app I was using couldn’t pass that test. It got embarrassed and changed the subject, the way a lot of people do.

I’d like to live long enough to talk to one that doesn’t.