Privacy Is a Luxury I Can't Afford

I should be the perfect audience for the privacy community.

I’m a techie. I’ve dabbled in self-hosting. I’ve looked at private cloud alternatives. I understand the arguments. I know what data companies collect, and I know why it matters. When someone says “de-Google your life,” I know exactly what they mean and how to do it.

But I can’t. Not because I don’t care about privacy. Because privacy keeps costing me things I can’t afford to lose.

Let me start with something that seems small: my password manager.

I use 1Password. The privacy community often recommends Bitwarden instead. It’s open source. It’s self-hostable. It’s cheaper. By most measures, it’s the more private option. And I know blind people who use it happily, who have no issue with it at all.

I’m not one of them.

The reason comes down to one feature: 1Password’s quick access popup. I hit Ctrl+Shift+Space, a search box appears, I type a few letters, and I have my password. I never have to leave what I’m doing. It’s fast, it’s keyboard-driven, and it works beautifully with NVDA. Bitwarden doesn’t have an equivalent. To get a password, I’d have to open the app, navigate to my items, search, find the right one, and copy it. More steps. More keystrokes. More time.

On a good day, that’s mildly annoying. On a bad day, and I have a lot of bad days, it’s the difference between something I use and something I avoid. I have fibromyalgia. I have rheumatoid arthritis. I have IIH, a condition where pressure builds in my skull and gives me headaches and pulsatile tinnitus that makes my head feel like it’s full of static. On those days, every extra step is a tax. Every extra navigation is a cost. The quick access popup isn’t a convenience for me. It’s an accommodation. And the “more private” option doesn’t have it.

Now here’s the part that’s hard to explain to people who haven’t lived it. Some blind people use Bitwarden and love it. I know some of them. And when I say Bitwarden doesn’t work for me, the privacy community points to those people as proof that it can. But most of those blind users never used 1Password first. They never had the quick access popup. They built their workflow around the slower path because they didn’t know there was a faster one. And most of them don’t have the additional disabilities I have. They’re blind, yes. But they’re not also dealing with fibro brain fog, cognitive fatigue, and the energy drain of a body that’s fighting itself.

Disability stacks. Being blind is one accessibility equation. Being blind plus chronically ill plus cognitively fatigued is a completely different one. A blind person without those extra conditions can absorb the cost of extra keystrokes. I can’t always. And when I can’t, I need my tools to work effortlessly, because I don’t have energy to spare on fighting them.

The privacy community sets the accessibility bar at “technically possible.” A blind person can use it, so it’s accessible. But that’s not the real question. The real question is: can a disabled person with multiple conditions use this every single day, including the bad days, without it draining energy they don’t have? Nobody in the privacy conversation is asking that.

This pattern repeats everywhere in my digital life.

Firefox is more private than Chrome. I know that. I’ve tried switching. But Firefox gets slower the more tabs I have open, and I tend to have a lot of tabs open because that’s how I research and write. Web games run noticeably worse in Firefox, and I’m a game developer. Extensions I rely on aren’t available or don’t work as well. Chrome isn’t perfect, but it stays fast, it has the extensions I need, and it runs the things I build. Firefox’s only real advantage over Chrome, for me, is privacy. Everything else about it is worse. That’s not a trade I can afford to make.

Then there’s self-hosting. The privacy community loves self-hosting. Run your own services. Control your own data. Don’t depend on companies that might change their terms or shut down. It sounds great. I’ve tried it. But self-hosted apps break. They break at random times, for random reasons, and when they break, you have to fix them. You have to read logs. You have to edit config files. You have to SSH into a server. You have to have the energy, the cognitive bandwidth, and the time to troubleshoot.

I don’t always have any of those.

Self-hosting assumes a stable baseline of energy and cognition. It assumes that when something breaks, you can drop everything and fix it. But what happens when the thing that breaks is your email, and it breaks on a day when you can barely sit up? What happens when your media server dies the same week as a fibro flare? What happens when the config file needs editing but your brain fog is so thick that reading a log feels like reading a foreign language?

On my worst days, eating is an achievement. “Just SSH in and check the logs” is not something I can do on those days. And I can’t schedule my flares around my server’s mood.

Even cloud alternatives that are more private often fail me. They cost more money, and I live on disability income. They have fewer features. They have no focus on accessibility. I’m supposed to pay more for less, and hope it works with my screen reader, and hope it doesn’t drain my limited energy with a clunky interface.

Take the whole de-Googling movement. I use Gmail, Drive, Search, Sheets, Docs. Google’s ecosystem is deeply integrated into my workflow, and it works well with NVDA. The only alternative that’s comparably accessible is the Microsoft ecosystem, and Microsoft is no more private than Google. I tried a Microsoft business account once. The admin center was confusing and overkill for a one-person operation. So the accessible alternative isn’t more private, and the more private alternatives aren’t accessible. There’s nowhere to go.

When I point this out, the answer is always the same: “Just spend the time to research the alternatives. Just try ProtonMail. Just set up your own server. Just switch.” Just. The word that assumes I have time, energy, money, and cognitive bandwidth to spare. The word that assumes I operate from the same baseline as everyone else in the conversation.

I don’t. Most disabled people don’t.

The privacy community talks about data as if it’s the only thing at stake. But for disabled users, the things at stake are much more immediate: energy, time, money, access, the ability to function on a bad day. Privacy is important. I’m not arguing it isn’t. But when privacy advocates push solutions that are less accessible, more expensive, less reliable, and more demanding of energy I don’t have, they’re not offering me freedom. They’re offering me another way to fail.

Privacy is a luxury. Not in the sense that only the wealthy deserve it, but in the sense that affording it requires resources many disabled people don’t have. Energy. Money. Cognitive bandwidth. Technical support. Good days. Until the privacy community starts accounting for what their solutions actually cost disabled users, their movement will keep leaving us behind. And we’ll keep choosing the tools that work, because we can’t afford the ones that don’t.