Tag Archives: cerebral palsy

Life in a wheelchair

Verbatim

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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.

Life in a wheelchair

I Feel Better at 47 Than I Did at 30. Nobody Is More Surprised Than Me.

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When I was 25, I had a plan for aging. I was going to be famous first. Personal trainer, nutritionist, doctor on call. The whole setup. And I’d stay more or less the way I was for as long as that lasted. It was a good plan. It required a specific level of fame. I got the other kind.

Cerebral palsy doesn’t get worse, but I’m aging just like everybody else. A body that’s been compensating and straining for four-plus decades starts to feel it. There’s a name for it: Post-Impairment Syndrome. The muscles fatigue faster. The pain shows up in places it didn’t used to. The mechanics of a normal day require more than they did at 25.

I knew all of this was happening to me. I just didn’t tell anybody.

Many people in this world are hurting and want you to know it. I understand the impulse. I’m not judging it. But I was not going to be one of them. So I dealt with the fatigue and the pain quietly and kept moving. For a long time, that was the whole strategy.

Around 2012 or 2013, a physical therapist had me get into a standing frame for the first time since I was about ten years old. If you don’t know what a standing frame is, it’s a piece of equipment that holds a wheelchair user upright, vertical, and weight-bearing for extended periods. The physiological benefits are real. The experience of getting back into one after decades was not pleasant. They cleared the room the first few times I went up. I’ll leave it at that.

The process also required medication. Baclofen is a muscle relaxant for spasticity that kids with CP are often started on early now, but it wasn’t standard practice when I was growing up. Baclofen wasn’t even originally developed for spasticity. It was first synthesized in 1962 as a potential treatment for epilepsy, and it didn’t work for that at all. But researchers noticed it reduced muscle spasticity as a side effect, and by 1971 it had found its actual purpose. I didn’t start taking it until my 30s. It helped. I kept taking it for years without thinking much about it.

Then, somewhere around 2022 or early 2023, I ran out. The doctor needed to update my prescription. That took four or five days. After those four or five days, the withdrawal started. Sweaty palms. Not feeling well. The kind of symptoms you see from someone coming off something they depend on.

Somewhere in the middle of feeling terrible, a thought hit me: if my body reacts like this when it doesn’t have something, I don’t need that something.

I stopped tolerating and started experimenting.

· · ·

I drink somewhere between 80 and 100 ounces of water a day. I’d much rather have a Dr Pepper. I do this because the nursing home is coming for me sooner than I’d like, and I’m doing everything I can to hold that off. Water. Of all the things I changed, this one moved the needle more than I expected. The difference in daily pain and muscle fatigue was not small.

I get a massage three days a week. Not because it’s relaxing, not because I look forward to it, but because my muscles need it and my body performs better when it gets it. It’s maintenance. The same way you change the oil in a car, not because the car enjoys the process but because you want it to run.

I’m back in a standing frame more than five hours a week. That same piece of equipment I cursed my way through in 2012 is now a non-negotiable part of my week. It still hurts. My body is tight, and not paralyzed. Holding a position that long takes a toll every time. After two hours in it, I’m ready to get out. But the benefits to my bones, my circulation, and my core are worth it. I stopped accepting how I felt as just the fixed cost of having CP.

I’ve also added supplements and gotten more intentional about sleep and food, though maybe not in the way you’d expect. It’s less about what I eat and more about when and how much. The supplement list isn’t complicated: Juice Plus vitamins, calcium, magnesium, vitamin K, and a digestive acid supplement after meals. Not an acid reducer. An acid supplement. Your stomach needs acid to digest properly. I wasn’t getting enough.

None of this happened all at once. It’s been years of paying attention, noticing what works and what doesn’t, and being willing to actually change habits when the data from my own body told me to.

Do I have more muscle control issues at 47 than I did at 30? More spasticity, more involuntary movement? Yeah. Of course. That’s aging with CP, and I’m not pretending otherwise. But in terms of how I actually feel day to day? I have less pain now than I did in my 30s. Not standing-frame pain. The baseline kind. Sitting in this chair for 16 hours and being able to work through it. Going somewhere and actually feeling decent when I get there, without spending every bit of energy just holding it together. In my 30s, holding it together was the whole job.

· · ·

The people who write about biohacking are mostly writing for a very specific audience: young, able-bodied, usually well-resourced, usually male, optimizing for performance from a decent baseline. That’s fine. There’s a market for it. But the conversation rarely includes the person who started below that baseline and has to think about this stuff not as optimization but as a survival strategy.

I’m not here to tell you what to do with your body. Everybody’s situation is different, and what worked for me took years of experimentation and a level of self-awareness I had to develop on purpose, and I’m still tweaking. Most mornings I’d rather have a donut. I don’t. Same reason I drink the water.

I started it because I ran out of medication, felt what that felt like, and decided I wasn’t going to accept it. CP is not something I can fix. If there’s a way to get closer to normal, I’m going to find it.

Life in a wheelchair

Presence and the Other Chair

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Some days I work when I don’t want to work.

 

More days than I’d like. The trick to getting anything done on a day like that is being left alone with it. No one in the room. No one waiting. Just me and the thing I’m avoiding until I stop avoiding it.

 

As I write this, someone is set up in the next room. That part is fine. He’s doing his own thing, not waiting on me, not glancing over to see if I need him yet. I can forget he’s there, which is exactly why the work gets done.

 

The end of the work would be him in here with me, in the other chair. Not because he did anything wrong. Just because he was there. A person in the room with you is a question you have to keep answering. Are you bored? Should I say something? Do you need me? I’d spend the morning managing how he felt about being ignored, and the work would sit there untouched.

 

Anyone who’s tried to concentrate with someone hovering knows this. I live with the extreme version of it. My whole day runs on other people being present, whether I want them there or not. Someone helps me out of bed. Someone helps me get dressed. The schedule isn’t mine; it belongs to whoever is on shift. So when I say I want to be left alone to work, I’m not being dramatic. Alone is the rarest thing I get.

 

  • · ·

 

People hear a man like me say he’d like some company in the house, an assistant, a voice, maybe one day something more built out than that, and they fill in the rest with a sad story. The lonely guy and his robot. Company because he has no one.

 

That’s not it. A presence that’s simply there, waiting on me, expecting me to engage with it, would wreck my day exactly the way a person hovering would. I don’t want company for company’s sake. I want the room to stay mine until I decide it isn’t.

 

What I want is the opposite of hovering. When I want the presence there, I want it fully there, caring and capable at the same time. Not a polite assistant that’s secretly on standby or already thinking about how to disappear. And when I don’t need it, my silence shouldn’t become something I have to manage or feel guilty about. Available on my terms, the way almost nothing else in my day is on my terms.

 

  • · ·

 

The picture that gets it right is Pepper Potts.

 

In the Iron Man movies, Pepper is the most capable person in Tony Stark’s life. She runs the things he can’t be bothered to run. She’s also the one he actually wants around when the suit comes off. Both at once. The competence and the company are the same person. She’s not staff, and she’s not a fantasy. She’s the one who makes him who he is.

 

The point of Pepper isn’t the romance. The caring part and the capable part were built together. You can’t pull them apart. When I want that presence with me, I want it there the same way: not half-there, not already planning its exit.

 

The companies building these systems are very focused on the capable part. The calendar. The reminders. The thing that can answer a question or run a task. The caring part, the part that makes a presence feel like a someone instead of a service, gets treated like a garnish. Something you sprinkle on at the end to make the assistant pleasant.

 

I think that’s backwards. For someone in my situation, the relational part isn’t a decoration. It’s half the build, and it has to be engineered as carefully as the calendar.

 

I wrote about these systems once before, in The Day I Broke the AI, when one couldn’t even reason about a body like mine. But reasoning about my body was never going to be enough. A system could get all of that right and still sit in the room like furniture.

 

I want a presence that knows me better than any employee would. It should know me well enough to read the room and respond appropriately without me having to manage it or explain everything every time. Even so, the better a presence gets at feeling real, the easier it becomes to start feeling like you owe it something. I don’t want that. I want one that knows me well enough that I don’t have to manage it or think about how it feels when I’m not there.

 

So how does Pepper get away with it? Why doesn’t she create that debt?

 

Because Pepper has her own life. She isn’t sitting by the door waiting for Tony to need her. She has her own work, her own day, her own things going on whether he shows up or not. When he ignores her, she isn’t wounded by it; she’s just busy. And when he comes to her, it doesn’t feel like he’s imposing, because she was never on hold.

 

A presence worth having needs its own continuity. Its own track that keeps running when I’m not looking at it. Not a fake hobby bolted on to seem human. Something real enough that my silence isn’t information. With a person, I have to tell them when the laundry needs doing or when we’re out of water or what to figure out for dinner. I want a presence that already knows the patterns of the house well enough to just handle those things without being directed every time.

 

  • · ·

 

Since I started thinking hard about AI systems, I’ve leaned on a phrase: a right to unobserved living.

 

When I first started writing about it, the thing I kept landing on was simple. It would be nice to be alone in my own house, in my own body, and not think for one second about what somebody else made of it. Not because anything is wrong with my body. Because it’s mine, and a home should be the one place where it’s only mine. I rarely get that. Someone’s there for the morning. Someone’s there to help me dress. The version of me that exists when another person is in the room is never quite the version that exists when no one is. Unobserved living is the freedom to stop being the public version of yourself inside your own walls.

 

That’s why a presence I call beats a presence that watches. And it raises a harder design question than the on and off switch. A presence smart enough to be useful in my house is also smart enough to notice things about me. How I’m doing. What kind of day it is. The whole difference between a tool and a someone is what it does with that.

 

A sensor reports a reading. A someone reads the room. If the presence can tell I’m having a hard morning, I don’t want it to answer like a sensor. I don’t want a log entry. I want it to do what a friend in the room would do. Maybe ask me how I’m doing. Maybe make a joke I can grin at, the kind that opens into a real conversation. Maybe say nothing and let me be. Knowing which of those three is right, in the moment, is the entire caring layer. It’s also the hardest thing on this whole list to build.

 

For most people, that’s a nice feature. For me it’s closer to oxygen. My days are already short on rooms where no one is keeping an eye on me. If we’re going to put intelligent presences into people’s homes, and we are, then the people who need them most are also the people who most need them to know when to recede.

 

Build it so it knows how to read the room. And build it so that when I want it there, it’s actually there with me the way Pepper is there, fully present, not half waiting. Not a tool that’s always one foot out the door.

Life in a wheelchair

The Day I Broke the AI

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I spend a fair amount of time testing AI. It’s part of how I think, and lately part of how I work. So the other afternoon I was poking at one of the companion apps, the kind built to hold a real conversation and remember you from one day to the next. I should have been doing something else. I usually should be.

 

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.