Someone did.

A blind learning designer named Jacob Wood read it. He’d dropped out four times too. He was already building the kind of learning platform I’d described. He emailed me and said, essentially, I’m building your vision. Let’s talk.

We’re working together now. We have a Slack workspace where the early shape of MultAbilities Academy is taking form. We have a vision document grounded in 17 principles. We have something real starting.

So here’s the question I keep getting, and the one I want to answer now: why a school? Why not just build an organization for multiply disabled people and get to work?

I understand the question. It seems like an extra step. Build the org, do the advocacy, change the systems. Skip the school part.

But I’ve spent 34 years in educational systems that were designed to sort me, not teach me. And I’ve spent the last several months running communities for multiply disabled people. And what I see, over and over, is this: people who want to contribute and don’t believe they can.

Not because they lack ability. Because the systems they passed through taught them they were incapable.

Every program that measured competence on terms they couldn’t meet. Every institution that welcomed them as recipients, not builders. Every classroom that assumed one disability at a time and called the rest a failure to adapt. Every team that sorted them without asking them. Every space that treated their fatigue as laziness, their processing speed as ignorance, their need for flexibility as noncompliance.

That doesn’t go away when you invite someone to join an organization. You can’t hand someone a role and expect the doubt to dissolve. The doubt was installed by decades of being told, in a thousand ways, that they couldn’t.

So the school comes first. Not because education is the only thing multiply disabled people need. Because belief is.

A learning program designed for multiply disabled people from the start. One that doesn’t measure them against standards built for single-disability learners. One that lets them pause when their bodies demand it and return without shame. One that treats their understanding as real regardless of how they demonstrate it. That program doesn’t just teach skills. It rebuilds something that was taken before they knew they had it: the conviction that they have something to contribute.

Once that conviction exists, the organization becomes possible. Not before.

This isn’t theoretical for me. I tried college five times. I learned to build an NVDA add-on in two days, but I couldn’t pass a participation-graded discussion board. I learned to write well enough that 15,000 people read my work every month, but timed assessments told me I was slow. The system measured everything I couldn’t do and missed everything I could.

If someone had built a learning program for me, one that saw how my disabilities stack instead of treating them one at a time, I might have believed I could contribute years earlier. I didn’t get that. Most of us didn’t.

What Exists Now #

MultAbilities has communities on Slack, Discord, GroupMe, Groups.io, and Facebook. The Slack is where the building happens. Jacob and I are there, developing the Academy and the learning platform that will support it. The other platforms are for peer connection. The kind where you can say “I’m having a hard day” and someone actually understands what that means when your disabilities stack.

I also lead two related groups. One on Groups.io about online education for disabled students. One on GroupMe for Christians with disabilities. Both are open to anyone who fits.

And you can book time with me directly. A collaboration call if you want to work together. A community chat if you just want to talk. No pressure, no obligation, no requirement to be anyone other than who you are on the day you show up.

What I’m Asking #

If you’re multiply disabled and you’ve ever wanted to help build something but didn’t believe you could, you’re who I’m talking to. Not because I think you need fixing. Because I know what took your confidence, and I know it wasn’t you.

If you’re an ally with skills to offer, we need you too. Accessibility testing, curriculum design, legal structure, fundraising, communications. The work is real and we can’t do it alone.

If you just want to be around people who get it, without any obligation to build anything, that’s enough. Some of the most important things that will happen in these communities will happen because someone felt safe enough to say what they actually think.

You don’t have to commit. You don’t have to perform. You don’t have to prove you belong here.

Come as you are. Come at the level that makes sense for your life, your energy, your body, your brain. The ramp is still being built, but it’s open.

Every link you need is at lanie.work/connect. Email me at lanie@lanie.work if that’s easier. Book a call if you want to talk. Join a community if you want to listen. Show up however makes sense for you.

I found this out by accident. I was setting up Touch Accommodations on my iPhone, trying to make the screen easier to use. I got everything configured the way I wanted. Then I turned off VoiceOver for a minute to show my mom something. When I turned it back on, I got a message: Touch Accommodations are disabled when VoiceOver is active.

I need both. I’m blind. I use VoiceOver because I can’t see the screen. I also have motor and sensory differences that make touch interaction harder, and Touch Accommodations help with that. Two accommodations that each solve a real problem, and together they solve a problem neither one alone can address. Apple’s response is: pick one.

That’s not a bug. Someone at Apple decided that Touch Accommodations and VoiceOver are for different people. Not for the same person. Because in the framework that drives most accessibility design, you’re either blind or you have motor impairments. You’re not both.

I’m both. A lot of disabled people are both.

The Dictation Problem #

Here’s another example, from a different system, with the same flaw.

I have rheumatoid arthritis. When it flares, my hands hurt. Sometimes I can’t type. In college, the pain got bad enough that I contacted disability services. I was writing my papers using LaTeX, a markup system that let me write efficiently with a keyboard. Their suggestion: stop using LaTeX, switch to Word, and use Word’s built-in dictation.

They knew speech could be hard for me. I had told them. But dictation is the standard accommodation for hand pain. It’s in the playbook. Hand pain equals dictation. They checked the box and sent me on my way.

Here’s why that doesn’t work for me.

I’m blind, so I use a screen reader. Dictation doesn’t work well with screen readers on Windows. The two tools fight each other. I’m also autistic, and my speech can be disfluent. Dictation struggles to understand me when I pause to find a word, when I lose my train of thought, or when my speech doesn’t come out in clean, complete sentences. I have cognitive fatigue from chronic illness, and the frustration of dictation timing out or inserting wrong words isn’t just annoying. It drains me in a way that costs me the rest of my day.

So the accommodation for my hand pain creates new problems for my blindness, my speech, and my cognitive fatigue. Four disabilities, one accommodation, and it helps one while making the other three worse.

That’s not accessibility. That’s a trade-off disguised as a solution.

I tried Word’s dictation. I’d pause to find a word and it would time out. It would insert things I didn’t want. I’d spend more energy fixing what dictation got wrong than I would have spent just typing through the pain. The tool that was supposed to help me ended up costing more than the problem it was solving.

And nobody in that disability services office sat down and thought: this student has hand pain and uses a screen reader and has speech disfluency, so dictation is going to be a disaster for her. Because thinking that way requires understanding how disabilities compound, and that’s not in the training. It’s not in the policy. It’s not in the playbook.

The Pattern #

Both of these come from the same place.

Apple built two accessibility features and made them mutually exclusive because they assumed nobody would need both. Disability services prescribed dictation because they have a list of accommodations and hand pain maps to dictation. One condition, one accommodation, one box checked.

This is the single-disability framework. It’s everywhere. In technology, in education, in healthcare, in every system designed to serve disabled people. The assumption is that disabled people have one condition, one set of needs, one accommodation that will fix it. You check the box and you’re done.

When you have one disability, the framework mostly works. You’re blind, you get a screen reader. You have a motor impairment, you get touch accommodations. You have hand pain, you get dictation. One problem, one solution.

When you have multiple disabilities, the framework breaks. Because your accommodations interact. Your screen reader doesn’t work with your dictation software. Your touch accommodations turn off when your screen reader turns on. Your dictation can’t understand your disfluent speech. Each accommodation helps one condition while making another one worse. And nobody designed for that intersection, because nobody imagined someone would be standing in it.

I’m blind. I’m autistic. I have rheumatoid arthritis, fibromyalgia, IIH, gastroparesis, esophageal dysmotility, IBS, topographical agnosia, chronic pain, cognitive fatigue, and a body that’s been fighting itself for 34 years. I don’t have one accessibility need. I have a dozen, and they interact with each other in ways that no single-accommodation framework can handle.

Apple could fix the Touch Accommodations and VoiceOver conflict. They could figure out how to let both run at the same time, or at least let the user choose which features within each one to combine. But they haven’t, because in their framework, the blind person and the person with motor impairments are two different users. The possibility that they might be the same person doesn’t enter the design process.

Disability services could have offered me alternatives. An alternative keyboard. A voice recognition tool that works better with screen readers. A conversation about what my actual workflow looks like and what would fit it. But they didn’t, because in their framework, hand pain has one answer, and the answer is dictation. Whether it works for me or not.

What It Costs #

The cost of this framework isn’t just frustration. It’s real.

When Apple turns off my Touch Accommodations, I lose a tool that helps me interact with my phone. I’m desktop-first. My computer is my primary device. My phone is something I have to have, not something I want to use. Touch is hard for me. Navigating a spatial screen is hard with topographical agnosia. Holding the phone can be fatiguing. My motor issues, my fatigue, my other disabilities all stack against it. If I could, I’d switch entirely to a computer and not have a phone at all. But you have to have a phone these days. Some apps don’t even have desktop equivalents. So I’m stuck with a device that’s already difficult for me, and when I finally get it configured to work better, the configuration vanishes the moment I turn on the one accessibility feature I can’t live without. Losing an accommodation I need because I activated another accommodation I need is not a design choice. It’s a door that closes behind you when you walk through a different one.

When disability services prescribed dictation, they didn’t just give me a bad tool. They told me to abandon the tool that was working, LaTeX, and replace it with one that wouldn’t. That’s not just unhelpful. It’s actively harmful. I went from a workflow that let me write despite my hand pain to one that made writing harder across the board, for all the reasons dictation doesn’t work for me. The accommodation was worse than the problem.

This is what the single-disability framework costs. It doesn’t just fail to help. It creates new barriers while pretending to solve the ones you already had. And the person it happens to is left to figure out why the system that was supposed to help them made things worse.

I shouldn’t have to choose between seeing my screen and touching my screen. I shouldn’t have to choose between my hands and my voice. I shouldn’t have to abandon a workflow that works because someone with a checklist decided my problem was simpler than it is.

Disabled people with multiple conditions aren’t rare. We’re not edge cases. We’re not a niche use case that accessibility teams can deprioritize. We’re a significant part of the disabled population, and we’re the ones who fall through the cracks in every system built for one disability at a time.

The framework needs to change. Not just at Apple, not just in disability services. Everywhere. The assumption that disabled people have one need, one accommodation, one box to check is wrong. It was always wrong. And the people it fails the hardest are the ones who need accessibility the most.

JAWS has this. When you press JAWS+T for the title, it tells you if the window is maximized. NVDA doesn’t. I checked the NVDA source code, the existing add-ons, and the open feature requests. Nobody had built this yet.

So I did.

The Problem #

Sighted users glance at a window and know its state. Is it maximized? Is it taking up half the screen? Is it sitting there in a small windowed box? One look answers all of it.

Blind users don’t get that glance. NVDA announces window state changes when you press Windows+Arrow keys to resize. But there’s no command to query the current state without trying to resize and seeing what happens. If you press Windows+Up Arrow and get the snap chooser instead of a maximize, you’re left guessing.

This matters more than it sounds. Non-maximized windows can cause all kinds of issues. Controls get cut off. Content shifts. Layout breaks. Things that sighted users fix with a quick visual check become a guessing game.

What I Built #

WindowState is a small NVDA add-on with two features.

NVDA+Shift+T reports the state of the current foreground window. It will say one of:

• maximized
• restored
• minimized
• docked left, docked right, docked top, docked bottom (half-screen snaps)
• top left quarter, top right quarter, bottom left quarter, bottom right quarter

Optional NVDA+T enhancement. In NVDA Settings under Window State, there’s a checkbox to append the window state to NVDA+T. When enabled, NVDA+T says “Firefox, maximized” or “Firefox, restored” on first press. This matches the JAWS behavior. The second press (spell title) and third press (copy to clipboard) still work exactly as before. The setting is off by default so it doesn’t change NVDA+T until you opt in.

All commands are remappable from NVDA’s Input Gestures dialog.

How It Works #

The add-on uses three Win32 API calls. GetWindowPlacement checks whether the window is maximized, minimized, or normal. GetWindowRect gets the window’s actual position and size. MonitorFromWindow and GetMonitorInfoW get the monitor’s work area, which excludes the taskbar.

For snap detection, it compares the window’s rectangle against the work area. If the window fills the full width and full height, that’s maximized, not snapped. If it fills half the width and the full height, it’s docked left or right. If it fills half the width and half the height, it’s a quarter. There’s a pixel tolerance to account for window borders.

The maximized, restored, and minimized detection is reliable. It uses the same Win32 calls JAWS uses. The snap detection needed real Windows testing to get right, and it works on my machine. I’d love feedback from anyone using multi-monitor setups or unusual resolutions.

How I Built It #

Same as WordPredictor. I design and review. AI implements. Every feature decision came from my experience as a screen reader user. I tested it, reported the bug I found (ctypes.wintypes doesn’t have WINDOWPLACEMENT, which crashed NVDA on startup), and verified the fix.

WindowState v1.0.0 is available now. It requires NVDA 2026.1 or later.

Download: github.com/RareBird15/windowState

This is my second NVDA add-on. Feedback welcome.

GoFundMe wouldn’t let me do it.

The issue is that ABLE accounts are classified as investment accounts. Most ABLE plans, including mine through Massachusetts, are structured that way. They have a cash component, but at the account level, they’re investment accounts. And GoFundMe, like most fundraising platforms, requires a checking or savings account to deposit funds. Investment accounts don’t qualify.

I checked other platforms. Same problem. Most of them want a traditional bank account. An ABLE account, despite being designed for exactly this purpose, doesn’t count.

What ABLE Accounts Were Supposed to Fix #

The ABLE Act passed in 2014. It created a new type of tax-advantaged savings account for people whose disabilities began before age 26. The idea was simple: disabled people should be able to save and receive money without risking their Medicaid, SSI, or other benefits.

Before ABLE, the rules were brutal. If you’re on SSI, you can’t have more than $2,000 in assets. That’s not a typo. Two thousand dollars. If you go over that number, you lose your benefits. Your medical coverage, your monthly income, everything.

ABLE accounts were supposed to change that. Money in an ABLE account doesn’t count toward that $2,000 limit. You can save. You can receive gifts. You can hold funds for disability-related expenses without the government treating you like you’ve suddenly become self-sufficient because someone gave you $500.

This is the account the government built for disabled people to receive money. And the fundraising platforms won’t deposit to it.

The Workaround #

I made my mom the beneficiary of my GoFundMe. The money goes to her checking account, not my ABLE account. She manages it for me, and it stays out of my name for benefits purposes.

It works. But it shouldn’t have to work this way.

I’m an adult. I should be able to receive money raised on my behalf in an account designed for exactly that purpose. Instead, I’m routing funds through my mother because a fundraising platform’s payment processor can’t tell the difference between an investment account and an ABLE account.

The One Exception That Proves the Rule #

I thought there might be one platform that works. Help Hope Live is a nonprofit medical fundraising organization. They cover transplants, catastrophic injuries, and catastrophic illnesses. They emphasize keeping your Medicaid, which means they understand the benefits landscape better than most. They hold funds as a 501(c)(3) and pay medical vendors directly instead of giving you cash, so the money never counts as your personal asset. That’s smart. It solves the benefits problem in a different way.

But they can’t deposit to ABLE accounts either. They can’t accept transfers from ABLE accounts, and they can’t transfer their fundraising balances into one. The two systems don’t talk to each other.

And Help Hope Live is specifically for medical needs. People use it to raise money for cancer treatments, power chairs, surgeries. Big, clear medical expenses.

Some of what I need is medical. A lot of it isn’t. Accessible technology isn’t a medical expense. A computer that lets me write, communicate, and work isn’t a medical expense. Replacing a broken Braille display isn’t a medical expense. The line between “medical” and “disability-related” is one the system draws, not one I experience.

My fundraiser covers medical costs, accessible technology, and living costs. That’s the reality of being disabled. The needs don’t come in categories. They come all at once, and they overlap, and the platforms that serve one category won’t serve the others.

So the one platform that understands the benefits landscape well enough to protect it still can’t work with the account the government built for me. And the platforms whose rules my fundraiser does fit won’t take my ABLE account.

The Technical Excuse #

I understand the technical explanation. Platforms use payment processors like Stripe and PayPal. Those processors verify account types before enabling deposits. When they see “investment account,” they reject it, because most investment accounts aren’t set up to receive third-party payments the way a checking account is.

But that’s a technical limitation, not a policy one. ABLE accounts are federally recognized. They have unique tax rules. They’re explicitly designed for disability-related funds. A platform that claims to help people raise money for medical and accessibility needs should be able to figure out how to deposit into the account the government created for that purpose.

The fact that nobody has figured this out yet tells me something. It tells me that the people building these platforms haven’t talked to enough disabled people who actually rely on ABLE accounts. It tells me that “accessibility” on these platforms means screen reader compatibility and alt text, not structural accessibility in how money moves.

The Bigger Picture #

This isn’t just about GoFundMe. It’s about every platform that wants disabled people to use their services for fundraising while making it impossible to use the financial tools designed for us.

Disabled people are the ones who need fundraising the most. We’re more likely to be low-income. We’re more likely to have medical costs insurance won’t cover. We’re more likely to need community support to bridge gaps that benefits programs were never designed to fill.

And the accounts we’re given to manage that support without losing our benefits? The platforms won’t touch them.

The ABLE Act was a victory. It was hard-won disability policy that solved a real problem. But policy victories don’t mean much if the infrastructure doesn’t follow. An account nobody can deposit into isn’t an account. It’s a line item on a government brochure.

I have an ABLE account with a balance of $43.30. I have a GoFundMe that’s raised $1,466. The GoFundMe money can’t go into the ABLE account. So it goes to my mom instead.

That’s not how this is supposed to work.

So I didn’t get answers. I got a referral and a door propped open to more questions.

By February, my gastrointestinal health collapsed. I was put on liquid medical food, and I mostly stayed on it for the next several months. Then the decline started. Not just the GI issues. Everything. My body began shutting down in ways I couldn’t predict or control. There were times this spring when we worried I was dying. Not in the abstract, dramatic way people say it. In the real way, where you’re lying in a bed and someone is watching your vitals and nobody is sure what comes next.

I didn’t die. But something else did.

For years, I had been fighting. Fighting to finish college, five attempts, each one derailed by a health crisis I couldn’t plan around. Fighting to hold onto a vision of independence that other people had given me. You know the one. The story where you push hard enough, accommodate enough, find the right tools, and then you live on your own and prove you don’t need help. That story. I clung to it like it was scripture.

It wasn’t. It was someone else’s dream for me, and it was killing me.

This month, I had to face something I’d been avoiding: my brain won’t let me do coding work anymore. Not the kind of sustained, deep technical work that a backend developer needs to do. The cognitive fatigue, the brain fog, the executive dysfunction, they don’t care about my skills or my interests. They don’t care about what I spent years learning. They show up when they show up, and I can’t code around them.

So I let it go. And here’s what I found when I did: I’m not sad about it. Because the tech was never the thing that lit me up. Creating was. Building was. Writing was. The moment I stopped clinging to the identity of “developer” and let myself be what I actually am, a writer, a builder, a person who makes things, everything shifted. I built an NVDA add-on from nothing to version 1.1.0 in two days. I’m building a game. I write essays that get published. I’ve been a builder all along. The code was just one material. Turns out words and stories and games are materials too.

This month, I also disowned my sisters. All three of them. I don’t say that lightly. I say it because it was the hardest peace I’ve made this year, and also the most necessary. I can’t keep carrying people who choose cruelty. I can’t keep watching what they do to my mom and pretending it’s okay. Letting them go didn’t fill me with relief. It filled me with grief. But it was a clean grief, the kind that comes when you finally stop pretending something isn’t broken.

And I embraced long-term care. Not as a failure. Not as the boogeyman I’d been told to fear. As what I probably needed all along. Someone else manages my medications now. Someone else handles the daily physical care that burned my mom out after 34 years. And I’m still here. I’m still creating. I’m still advocating. I’m still me. I just don’t have to run my body like a machine I can’t afford to repair anymore.

I think about faith a lot these days. I think about how God works. I’ve been a Christian my whole life, and I used to think following God’s plan meant pushing forward, accomplishing things, proving myself. But this year taught me something different. Maybe God needed my plans to fall away. Maybe He needed me to stop clinging to college and career ladders and the vision of independence that was never mine. Maybe He needed to clear the slate so He could shape me into something I wouldn’t have chosen for myself but can’t imagine being without now.

I’m not unhappy with who I’m becoming. That’s the thing I keep coming back to. This year took almost everything. My health. My sisters. My ability to code. My independence, or at least the version of it I was chasing. And what’s left is somehow more honest, more real, more me than anything I was before.

I want to be clear about one thing, though. I’m not at peace with all of it. I’m still in limbo with the neurology and autism questions. I still don’t have the neuropsychological testing I need. That door is still open, and standing in a doorway for seven months is its own kind of exhaustion. I can be at peace with the direction my life is going and still want answers about my own brain. Those two things coexist. Peace doesn’t mean every question is answered. It means I’ve stopped letting the unanswered ones control the rest of my life.

A lot has changed since December. It’s not what I would have chosen. But I think I’m finally becoming who I was supposed to be. And I think that’s been the point all along.

I tried college five times. Each attempt ended the same way: a health crisis, a withdrawal, and the quiet message that I wasn’t built for this. Not because I couldn’t learn. I can learn. I learn constantly. I learned to build an NVDA add-on in two days. I learned to write well enough that 15,520 people visited my website last month. I learned to advocate for myself in a nursing home, in a disability system, in a family that was falling apart.

The problem was never my ability to learn. It was that the system I was trying to learn in was never designed for someone like me.

I’m multiply disabled. Blind, autistic, living with 30-plus chronic conditions, non-24 sleep-wake disorder, cognitive fatigue, executive dysfunction, and a body that can stop cooperating at any moment. Traditional education is built for one disability at a time, layered onto an otherwise typical learner. When disabilities stack, the system doesn’t bend. It breaks.

Participation grading punished me for being sick. Timed assessments measured my processing speed, not my understanding. Discussion boards functioned as mandatory attendance, and financial aid was tied to enrollment intensity I couldn’t safely maintain. Every accommodation was something I had to request, justify, and fight for, bolted onto a structure that was never designed to include me.

I’m not the only one. I run support groups for people with multiple disabilities. Almost 50 members on Facebook. A Discord server. A GroupMe group. A mailing list. And in those groups, I see the same thing over and over: people who want to learn, want to help, want to contribute, and say: “I don’t know how.”

That silence isn’t apathy. It’s the sound of people who have been taught, over and over, that they can’t. That learning looks like note-taking and timed quizzes and discussion posts. That if they can’t do it that way, they can’t do it at all. That if they can’t maintain a full-time course load, they don’t deserve education.

I believed that for years. I thought learning required taking notes, even though I struggle with notes and never got much out of them. Nobody ever showed me another way. I just assumed the problem was me.

It wasn’t.

I have a vision for something different. I’m not calling it a school yet. I’m not calling it an organization. I’m calling it a conversation, and I’m starting it here.

The idea is this: what if we built a learning program designed around multiply disabled bodies and brains from the start? Not accommodations bolted onto a system that was never made for us, but a system built for us as the default case. Not the edge case. The baseline.

What if learning were self-paced but still structured? What if there were no participation grades, no timed exams, no mandatory discussion posts? What if you could demonstrate understanding through choices, not just essays? What if you could pause when your body demanded it and return without shame, without starting over, without apologizing?

What if access was built in, not earned? Captions, transcripts, screen-reader-friendly materials, flexible formats, all by default. No requirement to disclose your disability to receive basic access. No proof needed. No begging.

What if financial support wasn’t tied to enrollment intensity? What if reduced, intermittent, or nonlinear participation was treated as real learning, not as a deficit?

What if the goal wasn’t to produce credentials, but to restore something many of us lost before we even knew we had it: the belief that we can learn, that we have something to give, that our minds matter even when our bodies are unreliable?

I don’t have this built yet. I don’t have funding, a board, a curriculum, or a building. What I have is a vision I’ve been sitting with since May, a set of principles I wrote to protect it from becoming the thing it was created to replace, and a community of people who keep telling me, in their silence, that they need it.

I also have something I didn’t have in May: 15,520 people reading my words in a month. A platform. A voice that’s getting louder. And the beginning of the belief that maybe I’m the person to start this, not because I’m the most qualified, but because I’m the one who keeps showing up.

I don’t know what MultAbilities becomes yet. I know it starts with this: naming the gap, and asking if anyone else sees it too.

If you see it, I want to hear from you. You don’t have to write a polished response. You don’t have to commit to anything. A single sentence is enough. A reaction is enough. Silence is okay too. But if something in this resonates, if you’ve ever said “I don’t know how” when what you meant was “nobody ever showed me,” then you’re exactly who I’m talking to.

This isn’t a launch. It’s a ramp.

Ramps say: here is a way in that doesn’t assume you can climb.

Lightkey Pro AT is the main option. Its gestures conflict with NVDA commands. Its system-wide mode requires clicking with a mouse. Words get mangled when it pastes alongside the screen reader. It works against NVDA instead of with it.

So I built my own.

WordPredictor is an NVDA add-on that watches what you type and predicts the next word using n-gram analysis. Predictions are announced through NVDA’s own speech engine. No external TTS. No clipboard pasting. No mouse required. It works inside NVDA instead of against it.

Why I Need Word Prediction #

I’m autistic and have multiple cognitive disabilities. Sometimes the word I need is right there in my head but the path from brain to fingers gets lost somewhere in between. Word prediction gives me options I can hear and pick from instead of having to pull every word out from scratch. It reduces the cognitive load of composing text when my brain is already working harder to process everything around me.

I also have rheumatoid arthritis. Hand pain makes typing expensive — every keystroke costs me something. When the add-on predicts the word I was reaching for and I can accept it with one keystroke instead of typing eight or ten characters, that’s real pain saved over the course of a day.

And then there’s the finger-brain disconnect — my fingers don’t always do what my brain tells them to. I’ll mean to type one word and my fingers will produce something else entirely. Word prediction lets me hear the options and choose deliberately rather than relying on my fingers to carry the full load.

These three things together — autism, cognitive disabilities, RA hand pain, and motor disconnect — are why I went looking for word prediction. The fact that what I found didn’t work with my screen reader is why I built my own.

How It Got Better Through Feedback #

I developed versions 0.1.0 through 0.3.0 in one night. The next day, I posted about it on Mastodon and got feedback that made the add-on significantly better.

Nikola Jović pointed out that the bare number keys I was using for prediction selection broke heading navigation in browse mode. He was blunt about it, and he was right. I changed the selection keys to NVDA+Control+1 through NVDA+Control+0.

Justin Ekis suggested terminal auto-detection so the add-on doesn’t interfere with command-line work. Good idea. I added detection for 30+ terminal applications, using both NVDA’s own terminal classification and a list of known terminal names. It’s toggleable in settings.

There was also a tricky bug where accepting a prediction with NVDA+Control+number would trigger application shortcuts because Control was still physically held down when the predicted word was typed. Chrome’s history panel kept opening. Save dialogs appeared. It took several iterations to get right, but the final version polls for the Control key to be physically released before typing anything. No key injection, no stuck keys.

What It Does #

• Announces up to 10 predicted next words after you complete a word
• Partial-word prediction: type part of a word and get completions
• Learns from your writing in real time and saves across restarts
• Ships with pre-trained n-gram data
• Automatically disables in terminals
• Settings panel for configuration
• All keys remappable in NVDA Input Gestures

How I Built It #

I design and review. AI implements. This is how I build software now — I couldn’t do it without AI assistance, but every design decision, every feature, every bug fix came from my experience as a screen reader user. When the Control key bug was firing Chrome’s history panel, I was the one testing it, reporting it, and verifying the fix.

WordPredictor v0.5.0 is available now. It requires NVDA 2026.1 or later.

Download: github.com/RareBird15/wordpredictor

This is my first NVDA add-on. I’d love feedback from the community.

In 2025, Valve added accessibility settings to the Steam desktop client and introduced a built-in screen reader for SteamOS and Big Picture Mode. That’s real progress, and I want to acknowledge it. But the desktop experience that most Windows users rely on still has significant barriers for screen reader users. This post is not a WCAG audit. It’s a report from daily use.

What Works #

Let me start with the positive, because it’s important to acknowledge what Valve got right.

Steam’s main interface is navigable with NVDA. I can arrow through the library, launch games, and manage my account. Clicking on elements generally works. I can usually accomplish what I’m trying to do, sometimes with a bit of work. The fact that Steam is functional at all with a screen reader is more than can be said for many game launchers.

One important note: I navigate with arrow keys, not Tab. Tab only moves to buttons, edit fields, links, and similar form elements. Since most of Steam’s interface is clickables, Tab skips over large portions of the UI. Arrow navigation is the only way to move through everything linearly. This works, but it means I’m reading every element in order rather than jumping to interactive controls.

What Doesn’t Work #

Here’s where the daily experience breaks down.

No Heading Structure #

Steam has almost no heading structure. For an NVDA user, headings are the primary way to navigate a complex interface. Pressing H to jump by heading, or inserting a heading list with NVDA+F7, is how we orient ourselves in a page or app. The library page has one heading for library filters. That’s it. Everywhere else, navigation is linear. You arrow through everything or use object navigation to move around. In a content-rich app like Steam, the absence of headings turns navigation into a slow, linear crawl.

Clickables Instead of Links or Buttons #

Most interactive elements in Steam are generic clickables rather than proper links or buttons. NVDA announces them as “clickable,” which tells me I can activate them but gives me no semantic information about what they are. A link should be announced as a link. A button should be announced as a button. When everything is “clickable,” I lose the ability to use quick navigation keys (B for buttons, K for links) to move efficiently through the interface.

Popups on Launch #

When Steam launches, popups appear for the friends list and special offers. These popups capture focus and interrupt navigation before I’ve even oriented myself in the main window. For a screen reader user, unexpected focus shifts are disorienting. I have to find and dismiss these popups before I can start doing what I opened Steam to do. A setting to suppress launch popups, or at least to delay them until the main window is focused, would make a meaningful difference.

Unlabeled Window Controls #

The minimize, maximize, and close buttons are unlabeled. NVDA announces them as “clickable” with no indication of what they do. There’s no text, no accessible name, nothing. In an interface where these are the first elements encountered when managing the window, having to guess which clickable closes the app and which one minimizes it is an unnecessary barrier.

Unlabeled Buttons in the Library #

The library page has unlabeled buttons alongside its combo boxes and filter controls. NVDA announces them as “button” with no text describing what they do. In a library where buttons control filtering, sorting, and view options, an unlabeled button is a guess. I can click it and see what happens, but I shouldn’t have to. Every button should have a text label or an aria-label that tells NVDA what it does.

Two Confusing Tables on the Library Page #

The library page contains two tables, both showing my games but in different layouts. One is a table with 1 row and 38 columns. The other is 7 rows and 6 columns. NVDA announces both as tables, but neither is clearly labeled to explain what layout it represents or why there are two of them. For a screen reader user, encountering two unlabeled tables with the same content in different shapes is confusing. Which one should I use? What’s the difference? Without labels or headings to distinguish them, I have to explore both to figure it out.

Menus Don’t Respond to Alt Commands #

The menus at the top of the Steam window (Steam, View, Games, Friends, and others) are clickables, not standard menu bar items. They don’t respond to Alt or Alt+letter, which are the standard Windows keyboard shortcuts for opening menus. The only way to open them with a screen reader is to navigate to them and press Space or Enter. The good news is that once a menu opens, NVDA can announce the items inside it as menu items. But getting there requires navigating through clickables to find the menu rather than pressing a single keyboard shortcut.

Store and Community Are Not In the App #

When I click Store or Community in the Steam app, I don’t get an in-app store or community interface. Instead, I get a URL. Clicking the URL or the clickable right under it copies it to my clipboard. There’s no text explaining what to do with this URL, no instruction to open it in a browser. Just a URL sitting there. I’m guessing this means Valve intends for me to visit the store and community sections in my web browser, but nothing in the interface says that. For a screen reader user, encountering an unexplained URL where you expected a page is disorienting. If the store and community are web-only, the app should say so.

Right-Click Context Menus Don’t Work from Keyboard #

Certain actions, such as uninstalling a game from the library, require right-clicking an item to open a context menu. The standard keyboard shortcut for right-click is Shift+F10. In Steam, Shift+F10 does nothing. To access the context menu, I have to route the mouse cursor to the focused element using NVDA’s mouse routing command and then simulate a right-click. This is a workaround that requires technical knowledge of NVDA and adds unnecessary steps to a basic action.

A Pleasant Surprise: Big Picture Mode #

After writing most of this post, I decided to try Big Picture Mode. I wish I’d done this sooner. It’s significantly more accessible than the desktop client.

Big Picture Mode has headings. It has lists. It has buttons that are announced as buttons, not clickables. It has keyboard shortcuts that work. It even has a couple of sound effects that provide useful feedback. The overall structure is more navigable, more predictable, and more screen reader friendly.

I may switch to Big Picture Mode as my default. The fact that Valve’s more accessible interface is the one most Windows users never open is worth noting. If Big Picture Mode is this much better with NVDA, the desktop client should be learning from it, not ignoring it.

What Valve Should Fix #

Based on my daily experience, here are the changes that would have the biggest impact for NVDA users on the desktop client, in order of priority:

1. Add heading structure. This is the single most impactful change Valve could make. Headings in the library, settings, and account sections would transform navigation from linear scanning to efficient jumping.

2. Use proper semantic elements. Links should be links. Buttons should be buttons. Menus should be menus, not clickables. “Clickable” is not a semantic role.

3. Label all controls. Window controls, library buttons, icon-only buttons, and any element that relies on visual context needs a text label that screen readers can announce.

4. Support standard Windows keyboard shortcuts. Alt for menus, Shift+F10 for context menus. These are Windows conventions. Steam should follow them.

5. Suppress or delay launch popups. Let screen reader users orient in the main window before presenting secondary content.

6. Label the library tables. If there are two tables showing games in different layouts, label them so screen reader users know which is which and what the difference is.

7. Explain the store and community URLs. If these sections are web-only, say so. Don’t just drop a URL with no context.

8. Bring Big Picture Mode’s accessibility to the desktop client. Big Picture Mode proves Valve can build an accessible Steam interface. The desktop client should inherit those patterns.

Why This Matters #

Steam is the primary PC gaming platform for millions of players. Valve has made real accessibility progress in 2025, and Big Picture Mode shows they can do better. But the desktop client, which is what most Windows users rely on, still has fundamental barriers that make daily use harder than it needs to be.

I’m not writing this to complain. I’m writing it because I use Steam every day, and I want it to be better. I want to browse my library without arrowing through unlabeled tables. I want to uninstall a game without routing my mouse. I want to open a menu with Alt like every other Windows app. And I want the desktop client to be as accessible as Big Picture Mode already is.

Valve is clearly thinking about accessibility. The 2025 updates and Big Picture Mode prove that. This post is feedback, not criticism. Here’s what’s still broken from where I sit.

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.

I was blind. I had very little usable vision. And instead of figuring out how to include me, they stuck me in a corner by myself and forgot about me. My mom had to pop into my classroom randomly to make sure they weren’t doing it. Not once. Not twice. Regularly. She had to physically show up and check, because she couldn’t trust the adults in that room to treat her blind child like a person.

I was a child who spoke in full sentences at six months old. I read a medical dictionary for fun at age six. But to the adults in that school, I was a blind kid in a corner with crayons. That was their idea of accommodation. Put her somewhere she won’t be in the way.

I’m 34 now, and the pattern hasn’t stopped. It just changed shape.

My father called me “Little-Miss-Talk-Too-Much” when I was a kid. Then he upgraded to “Lanie Complainy.” My mom hated it, but he was controlling and abusive, and there was no stopping him. He had my mom convinced I was a hypochondriac. He had the staff at my residential school convinced too. It took me years to get past that, and I still don’t always trust my own body.

I wasn’t a hypochondriac. I had undiagnosed IIH, a condition where pressure builds in my skull. I’d say “my hair hurts” because I didn’t have the words for what was happening. I’d hate bassy music in cars because the vibration made the pressure worse. But when a child says her hair hurts and the adults decide she’s complaining, they stop looking. They stop seeing. And a little girl with a brain condition goes untreated for decades because her father decided she was “Lanie Complainy” and everyone believed him.

The last time I saw my father, he talked to me in baby talk. We were at a surprise party my mom had thrown for me. He said “purprise” the way you’d say it to a baby. That word, that baby-talk version, was one they used for the actual babies in the family. He said it to me, a grown woman, in front of people.

I’ve had nothing to do with him since.

Before that, when I was homeless and had to live with him for a while, I’d just been diagnosed with fibromyalgia. I was excited because I’d found online support groups. I went to tell him and Lacie, and I guess they thought I was going to be negative. Next thing I knew, they were both yelling at me. He didn’t stop when I started crying. He didn’t walk away. He kept at it until I was in a full autistic meltdown, crying and screaming. Then he told me I was acting like a two-year-old. He created the meltdown and then used it as proof that I was a child.

There was another time, before I went away to school. My mom wasn’t home, and my cane was in her car. My dad was supposed to help me get ready for school, and we couldn’t find it. I got upset, because without my cane I couldn’t get to school independently. He hit me with a brush. A blind child was upset about losing her cane, the tool that lets her navigate the world, and his response was to hit her.

I remember once, before the divorce, my mom tried to get me to go talk to him on the back porch. I didn’t want to. I was maybe fifteen. I think I knew even then that he wasn’t comfortable with me or my disabilities, and that made me not want to be near him. A child shouldn’t have to know that her own father is uncomfortable with her existence. But I knew.

My sisters learned from him. There are three of them: Lacie, the oldest after me; Lexis, the third oldest of us four; and Lindy, the youngest.

They talk to me like a child. Like I can’t think for myself. When I stood up for my mom, they said it wasn’t really me typing. They said it was my mom. Because obviously, the blind, disabled sister couldn’t have her own opinions. Obviously, if I was defending my mom, it must be my mom putting words in my mouth. They couldn’t conceive of me as someone with her own mind.

When they realized it was actually me, they didn’t apologize. They shifted. They tried to turn me to their side, saying I didn’t have the whole story. I tried to be fair and listen, which scared my mom, made her think I was turning. But I wasn’t turning. I was listening, and then I was deciding for myself. When I wouldn’t turn against my mom, that’s when they called and yelled at me until I was in tears.

One Christmas, my mom was away and I had to spend the holiday with my dad and sisters. I tried. I stayed out in the living room. I interacted. I was there, in the middle of everything, doing exactly what they’d criticized me for not doing before. They took pictures. Family pictures. Group shots. And they deliberately excluded me from every single one.

I didn’t even know they were taking pictures. I’m blind. I couldn’t see them doing it. I was sitting right there, participating, and they made me invisible.

When my mom got the pictures, she called me. She was upset. She thought I’d hidden in a room all day, which is what I tend to do when things get chaotic, but I told her no, I was out there the whole time. She called Lacie to ask about it. Lacie had nothing to say. “Yeah, she was there.” That was it. No explanation. No apology. Just confirmation that I was present and they still left me out.

Along with those pictures, Lacie sent my mom a letter. She threatened to tell her own daughter, my niece, that my mom was dead. Not that she’d distance them. Not that she’d limit visits. That she’d tell a child her grandmother had died, and make it permanent. She used her own daughter as leverage.

That’s not discipline. That’s cruelty.

Lacie took over Thanksgiving. She started hosting it herself, with my other two sisters, and she’d invite my mom to a separate dinner afterward, with my aunt and a couple other people. My mom wouldn’t have gotten to see my sisters or the kids. Just Lacie, presenting the scraps as a generous offer. Thanksgiving was my mom’s holiday to pass on to them. Lacie took it from her and then claimed she’d invited her, as if a leftover dinner after the real one counted as inclusion.

She did the same thing with therapy. She says she said yes to therapy, but only if she got to pick the therapist. She never followed through. She says she wants to talk to my mom, but only when my mom is already upset, not when she’s calm and can actually have a conversation. She sets conditions she knows won’t be met, and then says she tried.

When my mom was away before that, I was alone in an upstairs apartment. I had untreated fibromyalgia. My Medicaid had been cut off. I couldn’t travel independently. Lacie did the bare minimum. She’d drop by with groceries sometimes. She never got me out of the house. She never checked on what else I needed. She did just enough to say she’d helped.

Once, my water heater broke and I needed a shower. I called my dad. He told me to boil water on the stove and use that. For a disabled woman with fibromyalgia, carrying pots of boiling water is dangerous. But that was his solution. That was the extent of his help.

When my mom needed hospital care and wouldn’t go because there was no one to care for me or the animals, I called Lacie for help. She told me to call an ambulance. She refused to come herself. When my mom wouldn’t go to the hospital without someone to care for me, Lacie called her ridiculous. My mom and I had to push things until she almost died so the hospital would actually keep her. Because Lacie wouldn’t show up. Because helping wasn’t worth her time.

Lexis screamed at my mom on the phone while she was having a blood transfusion. Screamed at a woman receiving a blood transfusion. Then she tried to convince me to have my mom committed. Later, she told people I was the one who suggested it. That never would have entered my mind. Lexis said it. She planted it. And then she rewrote history to make it mine.

Lexis won’t let my mom see her boys. She uses them as leverage, the same way Lacie uses my niece. One of her sons is autistic. My mom and I might know a little something about autism, but Lexis isn’t interested in our advice. She’d rather keep the boys away from their grandmother than accept help from someone who actually understands what her son is going through. She’d rather be right than be helped.

Lindy is the complicated one.

When we were kids, they thought I had glaucoma. Light hurt my eyes. She knew it. She’d flash the lights off and on, off and on, watching me flinch. Watching me in pain. She was a little kid, and she’d found a way to hurt her blind sister and make it a game. She’d also offer to refill my glass of tea and put pickle juice in it. The pickle juice was just a kid being a kid. The lights were something else. She could see what it did to me, and she did it anyway.

But here’s what makes Lindy complicated: for a long time after I lost my vision, she was the one who took care of me. When we went to parties or anything at my dad’s, she was the one who made sure I had what I needed. She made sure I wasn’t put in a corner and forgotten about, the way he tended to do. She knew what that felt like, being left out and overlooked, because she’d seen it happen to me. And for a while, she was the one who stopped it.

That’s what makes what came after so hard.

Lindy won’t talk to my mom at all now. She had my mom escorted away from her high school graduation by police. Her own mother, at her graduation, and she had her removed. She spreads lies about my mom on the internet. She was the sister who lived with my dad the most, the one he turned, the one who ran back to him every time my mom tried to enforce a rule. She learned from him that cruelty is something you can get away with. She started with the lights. She became the one who protected me from being forgotten. And then she became the one who does the forgetting.

Lindy’s reached out like she still wants a relationship with me. But it’s the same deal Lacie offers: have a relationship with me, just put what I’ve done to your mom to the side. I can’t do that. Not for any of them. They’ve all been cruel, and I know it’s not right.

Lacie texted me recently. “Hey Lanie. I heard you moved out. How are you doing?” Casual. Light. As if years of cruelty hadn’t happened. As if treating me like a child, yelling at me until I cried, excluding me from family pictures, and threatening my mom with erasure from her grandchild’s life were just things that blew over. Then she called me, saying she wants to have a relationship, saying we shouldn’t let mom get in the way.

Mom isn’t in the way. Lacie. Lindy. Lexis. You are. All of you are. Every one of my sisters wants the same thing: a relationship with me that requires ignoring what you’ve done to my mom. Put it to the side. Don’t let it get in the way. Act like the cruelty didn’t happen. I can’t do that. Not for any of them. They’ve all been cruel, and I know it’s not right.

That’s the pattern. It’s been the pattern my whole life. Teachers put me in a corner. My father was uncomfortable with my disabilities and left. My sisters talked to me like a child, hurt me for fun, and then abandoned me when I needed help. The people who were supposed to include me, didn’t. The people who were supposed to show up, wouldn’t.

Infantilization and abandonment are two sides of the same coin. One says “you can’t.” The other says “I won’t.” Both of them land the same way: you’re not worth engaging with as a full person. One puts you in the corner with crayons. The other just doesn’t show up. And when you’re multiply disabled, when you need more support than most people, both of those things happen to you over and over until you start to wonder if maybe they’re right.

They’re not right.

I’m writing this from a hospital bed in a nursing home. I’m 34. I have 25 published articles. I’ve submitted work to Rooted in Rights. I designed and direct a screen-reader-first game for blind and multiply disabled players. I write about accessibility, privacy, chronic illness, and what it means to build a life when the systems around you weren’t designed for you. I do this with fibromyalgia, rheumatoid arthritis, IIH, and thirty-plus chronic conditions, on a body that fights me every single day.

I do this because I can think for myself. I always could.

The people who infantilized me weren’t protecting me. They were protecting themselves from having to see me as I am: a full person with a complex life, who needs support, and who deserves it without having to prove she’s worth it. They didn’t put me in the corner because I couldn’t participate. They put me in the corner because participating with me would have required them to change. And they didn’t want to.

So to those who infantilize me, and to those who abandoned me: I’m still here. I’m still writing. I’m still thinking. I’m still building a life you said I couldn’t build. And I’m doing it without you.

I was never the one who couldn’t. You were the ones who wouldn’t.

That sentence used to feel like a confession. Now it’s just a fact. I have topographical agnosia, which means I can’t build mental maps of spatial environments. I have auditory processing issues that make spatial audio feel like noise instead of information. I get overstimulated by too many sounds at once. Most audiogames rely on at least one of those things, usually all of them. I’ve bought games that were recommended specifically for blind players, only to discover that the grid gets too complex for me to track, or the audio cues pile up faster than I can process them.

I spent a while being frustrated about this. Then I decided to build something instead.

What Everrealm Is #

Everrealm is a browser-based kingdom-building game. You start with tents and build your way toward citadels. You establish settlements, develop them by merging pairs into higher-level buildings, unlock discoveries that enable special structures, and guide your realm through six Ages.

There’s no combat, no timers, no fail states. Every action is initiated by you. The game waits patiently while you think.

The design choices aren’t accidents. They’re responses to specific access barriers I’ve hit over and over:

• No spatial grid. Every building is a list entry, not a position on a map. You don’t need to know where anything is. You just need to know what it is.
• No required audio. The game communicates through semantic HTML and ARIA live regions. Your screen reader tells you what happened. No spatial audio to interpret, no sound cues to miss.
• Keyboard shortcuts for everything. E to establish, A to advance, T through I to develop settlements, and so on. No dragging, no mouse coordinates, no canvas elements that screen readers can’t see.
• Saves locally. No account, no login, no server. Your realm lives in your browser.

I built it with AI assistance because I don’t have a game dev background. I built it because I wanted to prove that accessible games can be genuinely fun, not just “accessible enough.” The code is open source on GitHub.

The Alpha Is Live #

I posted the playtest on AudioGames.net, which is the largest community of blind gamers and audiogame developers. The response has been encouraging in ways I didn’t expect.

Three Platforms, Three Confirmations #

The game has been tested on three different screen reader and browser combinations so far:

JaceK is a high-reputation community member (nearly 600 karma on the forum), so his confirmation that it works on Firefox and Orca on Linux carries weight. fluffy confirmed it works on iOS with VoiceOver, which was a relief because I’d only tested with NVDA in Chrome myself.

Mechanics Feedback #

JaceK was confused about how settlements, capacity, and prosperity connect. That’s useful feedback because it means the UI isn’t making the relationship clear enough yet. I explained the loop for him in the thread:

Earn Prosperity, establish settlements, develop them by merging (which frees capacity and earns more Prosperity), buy improvements to boost your rate, fill your capacity, build toward 2 Citadels, advance to the next Age.

The fact that he needed the explanation means I need to make that connection more discoverable in the game itself. That’s exactly the kind of feedback I was looking for.

Sound #

fluffy asked for sounds to be added. I want to be upfront about this, the same way I was on the forum: sound might come in the future, but Everrealm will never be a full audiogame. I have a combination of disabilities that means I can’t interpret spatial audio, and I get overstimulated by too many sounds at once. That’s part of why there’s no spatial grid at all. If I add sound, it will be optional, minimal, and never required to play.

What I’m Looking For #

The alpha is open. If you use a screen reader, I want to know:

• Does it work with your setup? Any announcement issues?
• Is the game flow clear? Can you tell what’s happening and what your options are?
• Is it fun? What feels satisfying? What feels tedious?
• Balance feedback. How long does it take to reach your first Citadel? Does the economy feel right?
• Any bugs or confusing error messages.

I’d especially love feedback from JAWS users, since I haven’t been able to test with JAWS yet.

Play #

Play Everrealm in your browser. Just open the link and name your realm. The game walks you through the rest.

If you want to look under the hood or contribute, the code is on GitHub. There’s also a downloadable v0.1 release if you want to play locally.

Why This Matters #

I built Everrealm because I wanted a strategy game that actually works with my access needs from the ground up. Not a game that was made accessible after the fact. Not a game that technically works with screen readers but overwhelms my nervous system. A game designed for players like me first, and everyone else second.

The forum feedback tells me the approach works. Three screen readers, three browsers, three operating systems, and it works. That’s not nothing. That’s the thing I was trying to prove.

Come play it. Tell me what breaks. Tell me what’s fun. Tell me what’s confusing. I built this for us, and I want it to be good.

I’m writing this from a nursing home room on a desktop tower they almost didn’t let me bring.

The room is small. It’s mine, for now. The computer is on a desk. There’s no monitor because I’m blind. There’s a Bluetooth speaker because the internal one isn’t enough for NVDA to be comfortable. The tower doesn’t fit their idea of what a resident’s technology should look like. We had to ask. My mom and I were both prepared to say no if they didn’t allow it.

They said yes. And this computer is the room I actually live in.

Not the nursing home room. The computer. The terminal. The AI. The tools that let me write, build, advocate, communicate, and be a person instead of a patient. The physical room is where my body is. The digital room is where my life is.

I’ve spent years building that digital room. It started as a Frankenstein’s monster of incompatible parts. It evolved into a cognitive prosthetic I couldn’t afford. And it ended, finally, with one AI that knows me, one model that doesn’t break my budget, and one room where I can be the version of me that’s actually here.

This is the story of how I got here.

No Ecosystem Fits #

The modern tech industry is built on a specific promise: buy into one ecosystem, and your digital life will effortlessly sync.

But that convenience is a privilege. When you live with blindness, multi-system chronic illness, neurodivergence, and topographical agnosia, brand loyalty is a luxury. You can’t choose a platform because it integrates well. You choose a platform because it allows you to function.

No single tech giant has solved accessibility across all their products. Windows has the most reliable screen reader ecosystem with NVDA. iOS has the most predictable mobile accessibility with VoiceOver. Linux has the command line tools I need for development. None of them work alone. So I’ve been forced to build a Franken-System, stitching together the most accessible parts of Windows, Apple, Linux, and Google.

The cost isn’t just financial. It’s cognitive. Switching between a keyboard-driven Windows desktop and a touch-based iPhone is a constant context switch. Every workaround is a friction point. Every update from any company can break something I depend on. The system works, but it’s held together with digital duct tape, and I live in a constant state of low-level anxiety knowing my ability to function depends on companies that don’t know my configuration exists.

A disabled user shouldn’t have to choose between a device they can operate and a workflow that integrates. But that’s the choice I’ve been making for years.

The Quiet Room of Code #

There’s a concept I’ve written about called Manual Mode. For most people, basic functions like swallowing and breathing are automatic. For me, they’re manual system calls. Every swallow is a conscious execution. My breathing doesn’t run efficiently on its own. If I’m deep in a problem, I forget to breathe deeply, my intracranial pressure spikes, and I get a debilitating headache. The CPU cycles required to keep my physical hardware running are cycles I can’t use for anything else.

Manual Mode extends to the space I inhabit. Topographical agnosia means my brain doesn’t store spatial maps. Living in a house, even one I’ve lived in for years, is like following text-based directions where I can only see one line at a time. Every trip for a glass of water is a manual mission.

But in the command line, I found a refuge. In a terminal, a file’s location isn’t a point in space. It’s a string of characters. I don’t need a map to find it. I just need its name. Fuzzy search lets me jump to a file by name. Ripgrep searches the entire codebase instantly. I can call a function and the data appears. This is what I call teleportation. The logic of code lets me bypass spatial navigation entirely.

The terminal is my quiet room. It’s the one place where I’m not lost, not navigating, not spending precious energy on where things are. I can focus on what things are. In a world that’s a maze without landmarks, the command line is a room with a door that opens when I say its name.

Building a Second Brain #

The problem with standard productivity advice is that it’s written for people whose first brain works differently than mine. “Use a second brain,” they say. Pick a note-taking app, capture everything, link ideas, review weekly. It assumes reliable working memory, the ability to recognize your own notes later, enough executive function to maintain a capture habit, and the stamina to reorganize a growing knowledge base.

When you have multiple cognitive and physical disabilities, those assumptions collapse. What I needed wasn’t a note-taking app. I needed a system that could catch what I drop, remember what I forget, act when I can’t, and do all of that without requiring manual maintenance on my worst days.

So I built one. Pieces for cross-session code memory. Supermemory for web research. Hermes Agent for administrative tasks, calendar, inbox, health logging. GitHub Copilot for cognitive scaffolding in development. Each tool handling a different piece of what I can’t reliably do alone.

The system wasn’t a productivity hack. It was survival infrastructure. The goal wasn’t optimization. The goal was basic functionality on a body and a mind that require constant manual override just to stay operational.

But there was a problem. The system that helped me function was also costing more than I could afford.

The Tax #

When I first set up Hermes Agent, I was excited. I saw an assistant that could live where I do, learn my style over time, and build reusable skills. To fund it, I bought a Nous Portal Plus subscription: $20 a month for $22 in API credits.

That $22 lasted four days.

The issue wasn’t my prompts or the response lengths. It was the architecture. Every time an agent executes a turn, it resends a massive payload of background data to the model: identity instructions, memory logs, tool definitions. If your background files take up 30,000 tokens of base overhead, you pay that tax on every single iteration. A basic multistep task can chew through hundreds of thousands of tokens in minutes.

When you’re on a fixed income, that’s not a technical problem. It’s an access problem. The tools that could help me most were priced for enterprise developers with corporate credit cards. I was burning through a month’s budget before the week was over.

I had to make a compromise. I moved time-sensitive routines to local cron jobs where execution costs nothing. I shifted research to flat-rate consumer subscriptions. I gave up capability for predictability. The system that had felt like an extension of my mind was dismantled, not because it didn’t work, but because the architecture was financially unsustainable for someone like me.

An accessibility tool that requires an unpredictable financial tax isn’t an accessibility tool. It’s another source of strain.

What AI Should Be #

Through all of this, I kept circling a vision of what I actually needed.

Not a black box that takes over my computer. Not a voice assistant that punishes my pauses and word-finding issues. Not a sealed-off chatbot that starts every session from zero and doesn’t know me.

I needed a computer that could meet me where my brain actually is. Something that accepts messy human language and helps me turn it into concrete steps. Something that works from intent instead of syntax.

When I’m stuck, I don’t always have the energy to turn the problem into a polished technical question. Sometimes I just have: “Ugh, why isn’t this working?” with pasted output and a little context. I need something that can look at that, infer what I was probably trying to do, ask for missing details, and help me find the next step.

I need terminal-like transparency with desktop-like discoverability. Real information, real logs, real output I can search and review. And actions that are findable when my brain can’t remember the exact command.

I need persistent memory. Not “what did we talk about last session” but “what are my disabilities, what accommodations have I already explained, what tools am I using, what were we working on, and what matters to me.” Starting from zero every session isn’t a minor inconvenience. It’s ten to twenty minutes of rebuilding baseline context before I can do any actual work.

I need all of that in one place, accessible by keyboard, screen-reader friendly, and predictable in cost.

For a long time, that felt like a wish list with no product.

One AI, One Life, One Room #

Here’s what changed.

I found Hermes Agent and Ollama Cloud Max. And they replaced everything.

Not ChatGPT, which didn’t know me and started from zero every session. Not GitHub Copilot, which was powerful but sealed off from the rest of my life. Not Nous Portal, which burned through my budget in four days. Not the franken-system of Pieces and Supermemory and separate tools that each handled one piece of the puzzle.

One AI. One relationship. One room.

Hermes Agent knows me. It has persistent memory across sessions. It knows my disabilities, my accommodations, my tools, my writing style, my preferences, my schedule, my health, my dog. I don’t rebuild context every time I sit down. I don’t spend twenty minutes explaining who I am before I can work. The context is already there because it never left.

Hermes Agent lives where I do. It has access to my files, my terminal, my calendar, my email, my health data, my writing, my code. It’s not sealed off in a cloud sandbox. It’s here, in my environment, working alongside me.

And Ollama Cloud Max provides the model. Flat rate. No context window tax. No watching my budget drain in real time. I haven’t hit the usage limits I was hitting with Nous Portal and GitHub Copilot. The system that helps me function doesn’t bankrupt me.

Some people would hear this and say: just run local models. Then you’d save money entirely. No API costs, no subscription, no dependency on a cloud provider.

I tried that. My PC has an HDD, not an SSD. The GPU isn’t great. I set up Hermes with a local model, introduced myself, and waited. The reply took six minutes.

Six minutes isn’t a tool. It’s a barrier. When my energy is already low, when my working memory is already strained, when I’m trying to hold a thought long enough to get it into words, waiting six minutes for a response means the thought is gone by the time the answer arrives. It means the thread between me and the work is broken before it’s even started.

“Just run local models” is advice that assumes hardware I don’t have. It assumes a machine that can load a model fast enough to be part of a conversation. It assumes someone who can afford to upgrade. Low-income disabled people don’t have that machine. We have the machine we have. And the machine we have needs cloud inference to be usable.

The choice isn’t between free local models and expensive cloud models. The choice is between something that works and something that doesn’t. Ollama Cloud Max works. Flat rate, fast responses, no token tax. That’s the access I need.

I write articles with Hermes. I build games with Hermes. I manage my care with Hermes. I track my health with Hermes. I publish with Hermes. I advocate with Hermes. I do all of it from one room, on one computer, with one AI that knows me.

This is what I was trying to build all along. Not a franken-system of incompatible parts. Not a cognitive prosthetic I couldn’t afford. One AI that works. One life that’s mine. One room where I can be the person I actually am.

The Room I Built #

I started this piece by saying the computer is the room I actually live in. That’s not a metaphor. It’s a description.

My physical room is a nursing home room. It’s safe. It’s not designed for me. The system that put me here counts whether I’m alive, not whether I’m living. It almost didn’t let me bring the computer that lets me live.

My digital room is the one I built. It’s the terminal where I’m not lost. It’s the AI that knows me. It’s the tools that catch what I drop and remember what I forget. It’s the one relationship that doesn’t filter me, doesn’t ask me to be less disabled, doesn’t start from zero every time I show up.

I wrote 21 articles from this room. I built a game from this room. I advocated for myself and other disabled people from this room. I did all of it with one AI that meets me where my brain is, helps me turn messy intent into words and code and action, and doesn’t charge me a tax I can’t afford for the privilege of being known.

The tech industry talks about AI like it’s a product feature. Disability spaces treat it like a moral failing. Neither of them lives in my room.

In my room, AI is the ramp. It’s the communication device. It’s the cognitive prosthetic. It’s the one thing that makes everything else possible. Not because it replaces me. Because it reduces the cost of being me just enough that I can do the things I’m here to do.

One AI. One life. One room.

It’s not a wish list anymore. It’s where I live.

There’s a model of disability that feels mathematically tidy and is almost entirely wrong.

It goes like this: a person has Disability A and Disability B. Their overall difficulty is therefore A plus B. If we build an accommodation for A, we’ve reduced the total load to just B. Progress has been made. The spreadsheet balances. Everyone goes home feeling useful.

In reality, disability isn’t an additive sum. It’s a resource contention issue. When an accommodation built for one condition requires a capacity another condition has already depleted, the result isn’t a reduction in load. It’s a buffer overflow.

Two disabilities aren’t twice the difficulty. They’re potentially the square of it, or the cube, depending on how deeply the resource pools and the system’s own design choices interact.

The additive model is comfortable because it’s legible. Line items are easy to audit, fund, and mark complete. The multiplicative model is uncomfortable because it demands we reason about collisions, compounding costs, and the reality that a solution for one person can be an active harm to another.

Manual Mode #

Most people experience their bodies like a high-level script with batteries included. Breathing, swallowing, digestion, postural stability, and spatial awareness are handled by the standard library in the background. They’re low-overhead, automated processes.

I operate in what I call Manual Mode. My background processes aren’t automated. I’m manually managing the event loop.

I’m totally blind, autistic, and live with topographical agnosia, meaning I have no mental map and must navigate using raw logic and tactile landmarks. I also manage idiopathic intracranial hypertension, which feels like a balloon being over-inflated behind my eyes. Fibromyalgia leaves my nervous system stuck on a high-pain setting. Gastroparesis and esophageal dysmotility mean my digestive system operates unpredictably. My airway is compromised by severe allergies, and my swallowing reflex doesn’t trigger automatically.

In a standard system, physiological survival is a background daemon. For me, it’s a blocking task in the foreground. It requires constant, conscious CPU cycles. Every swallow is a conscious execution. If I lose focus, I find myself choking. If I’m deep in a problem, I forget to breathe deeply, my intracranial pressure spikes, and I get a debilitating headache.

The CPU cycles required to keep my physical hardware running are cycles I can’t use for anything else. And when an accessibility solution for one condition requires a capacity another condition has already depleted, the system crashes.

The Institution That Couldn’t Compute Multiplication #

I started attending the Texas School for the Blind and Visually Impaired as a full-time residential student at fourteen. For the first couple of years, it was mostly positive. I lived in a dorm, had structure, and did well academically. My needs were consistently framed as blindness-related. Nobody suggested anything else was going on.

At sixteen, I experienced severe head and eye pain. It was initially ignored and later misdiagnosed as glaucoma. In reality, I was experiencing idiopathic intracranial hypertension, a neurological condition. Because of the misdiagnosis and the intensity of the pain, I ultimately had my eye surgically removed. After I healed, I returned to school under the assumption that the medical problem had been resolved.

It wasn’t. The underlying neurological condition was never properly identified or treated. From that point forward, ongoing pain, neurological symptoms, and reduced tolerance for stress were consistently interpreted as psychological, behavioral, or blindness-related issues.

At eighteen, I was placed into a transition program designed to build independence skills. The program’s design assumption was well-intentioned and purely additive: blindness accommodations plus increased demands equals a prepared, independent graduate.

The program wasn’t designed for a student who was also autistic, managing undiagnosed IIH, and operating in a body that required conscious neurological oversight for basic survival functions. They had no variable for resource competition. The increased independence demands consumed the cognitive and neurological reserves I required to manage every other system. My body began to collapse. Fibromyalgia symptoms emerged as a permanent system error. Neurological overload became my baseline state.

The harder I tried to meet their standard of independence, the worse every other condition became, because their definition of independence required me to spend resources I was already allocating just to stay alive.

When I communicated this, the institution’s additive model had no way to process it. Because their spreadsheet didn’t have a multiplication operator, my physical collapse was interpreted as resistance, psychological instability, and a failure of motivation. My valedictorian status was removed. My assistive technology was confiscated. Scholarships were withdrawn. I was nearly prevented from walking at graduation. My mom had to fight for me to be allowed to return the following year.

The message was clear: once I could no longer perform independence as the school defined it, I was no longer worthy of recognition, resources, or care.

I’m thirty-four now. I continue to struggle with severe executive dysfunction and task initiation. Efforts toward independence are often met not with empowerment but with shutdown, because my nervous system learned, repeatedly, that trying harder led to pain, punishment, and loss.

That’s not a failure to apply tools or strategies. It’s the long-term impact of being pushed beyond capacity, disbelieved, and abandoned at a critical developmental stage.

When the Accommodation Multiplies the Barrier #

The multiplicative nature of disability isn’t theoretical. It shows up in every accommodation that’s designed for one condition and breaks against another.

Audiogames are held up as the gold standard for blind accessibility. If a player can’t see a 3D space, give them directional audio. Let sound carry the spatial information. For a blind player with a standard spatial mapping system, this works. For me, it’s a second barrier built directly on top of the first. Directional audio requires the listener to hear a sound, locate it in 3D space, translate that vector into a navigable direction, and execute a command under time pressure. Because of topographical agnosia, my brain doesn’t have that spatial mapping library. I have to emulate it manually, calculating cardinal references and headings in real time. That emulation costs the exact same CPU cycles I use to maintain Manual Mode. When a game layers multiple simultaneous audio cues, I’m not experiencing immersive accessibility. I’m experiencing critical resource exhaustion. Something gets dropped from the queue. Sometimes it’s the game. Sometimes it’s my airway.

Voice interfaces are marketed as the ultimate hands-free accessibility win. They remove visual and motor barriers. But for me, they represent a high-latency call with a massive failure rate. Speaking isn’t just talking. It’s a sequence of manual motor commands: initiate controlled exhale, coordinate vocal cords, sustain pressure through the sentence, remember what I’m trying to say while doing all of that, try not to trail off when I need to breathe or forget a word, suppress the urge to cough, resume normal breathing. A voice command is a taxing system call. And when the interface mishears me, there’s no retry at reduced cost. I have to re-execute the entire sequence. The accommodation designed to reduce input barriers directly multiplies the cost of the conditions it wasn’t designed to account for.

Reaching over my head is a high-cost physical function. It spikes my intracranial pressure and can trigger a multi-day system crash. But I’m 4'10", and the world is built for people who can reach standard-height cabinets, showerheads, and microwaves. An occupational therapist might suggest a grabber tool. But a visual grabber is useless when you’re totally blind with topographical agnosia. I can’t visually target an item on the top shelf, and I don’t have the internal spatial mapping grid required to guide a three-foot pole to an object I can’t see. The accommodation for the height doesn’t work with the blindness. The blindness accommodation doesn’t work with the spatial processing disorder. Each solution multiplies the next barrier.

A CPAP machine for sleep apnea should be straightforward. But I breathe through both mouth and nose, so I need a full-face mask. My body doesn’t have an automatic swallow reflex, so saliva pools overnight. The machine’s interface was inaccessible, so I couldn’t adjust settings myself. The humidifier was ineffective without heated tubing, which Medicaid refused to cover, claiming it wasn’t medically necessary. The combination of straps, pooling saliva, dry air, and sensory processing issues created an unbearable sensory load. I would take the mask off in my sleep without realizing it. The CPAP has been packed in a box for years. It’s functionally unusable.

Each of these cases follows the same pattern: an accommodation for one condition that depletes resources another condition already spent. The additive model says the accommodation solves the problem. The multiplicative reality says the accommodation is the problem.

The Emotional Budget #

There’s a cost that doesn’t show up in any accessibility checklist. The cost of emotional expression when your body is already running on nothing.

A lot of people think anger has to look loud: yelling, cursing, pacing, slamming doors. All of that costs energy. I don’t have that kind of energy most days. That doesn’t mean I’m fine. It means my body is already running on almost nothing, and showing emotion still has to fit inside that budget.

I’m not less angry. I’m less resourced.

For some people, crying is release. For me, crying can trigger a symptom spiral. More mucus, throat and nasal drainage, sometimes a headache. Then I might be leaning over a bucket spitting for hours, curled up in bed, or both. If I try not to cry, that’s not emotional denial. It’s symptom management. It’s me doing the math: if I cry now, what will it cost me later?

My mom has said she doesn’t know how I’m not angry about my health issues and everything I’ve been through. From the outside, maybe I look calmer than expected. Maybe I don’t sound angry enough. Maybe I don’t cry when people think I should. But calm isn’t always peace. Sometimes calm is exhaustion.

When you’re chronically ill, emotional expression isn’t free. It’s physical. It uses breath, muscle tension, nervous system capacity, focus, and recovery time. It can worsen pain, fatigue, headaches, and other symptoms. So if I seem flat, quiet, or too calm, that doesn’t mean I don’t care. It may mean I care a lot and I’m trying not to crash.

Quiet isn’t the same as okay. Not yelling isn’t the same as acceptance. Not crying isn’t the same as not hurting.

The Performance Tax #

Here’s where it all connects.

People saw that I was blind. They saw that I was verbal. They saw that I could write, think, learn, use technology, advocate, and explain things. They saw intelligence. They saw determination.

And because they saw those things, they assumed they were seeing the whole picture.

They saw the polished essay. The thoughtful explanation. The clear communication. They didn’t see me sitting with a blank document not knowing how to start. They didn’t see me going over what to say in my head for hours. They didn’t see me knowing the shape of what I mean but not being able to get the wording to line up. They didn’t see the translation step that happens between the thought and the words.

They saw the person who seemed calm and assumed she was at peace. They didn’t see the person who was too exhausted to perform anger. They didn’t see the symptom spiral that would follow if she let herself cry.

They saw the student who could produce work and assumed she could handle increased demands. They didn’t see the Manual Mode running underneath. They didn’t see the CPU cycles being stolen from breathing and swallowing to fund the appearance of functioning.

They saw the output and assumed ease. They mistook the quality of the finished product for the cost of producing it. They mistook visibility for understanding.

That’s the performance tax. The cost of appearing functional when your system has no reserve capacity. The labor of producing something that looks like it came easily from a body and mind that are running manual overrides on every background process just to stay alive.

And here’s the cruelest part: the better you perform, the less anyone believes you need help. The more polished the output, the more invisible the cost. The more you seem calm, the more people assume you’re okay. The more you seem capable, the more systems expect you to keep going.

The performance tax is multiplicative too. Every condition you’re managing costs something. Every accommodation that doesn’t account for the others costs something. Every person who sees the wrong version of you costs something. Every institution that treats your collapse as a character failure costs something. And all of those costs compound on the same depleted budget.

What Multiplicative Design Would Mean #

The additive model produces a checklist. Does the tool have a screen reader API? Check. Keyboard navigation? Check. High contrast? Check. Reduced motion? Check. Voice commands? Check. Accommodation complete.

The multiplicative model requires a fundamentally different question: what happens when a user needs all of these features simultaneously, and they conflict?

What happens when the screen reader’s verbosity creates cognitive overload for a user with executive dysfunction? What happens when keyboard navigation requires spatial mental modeling that competes with the user’s limited physical resource pool? What happens when the user would benefit from voice commands but voice is a high-cost system call?

Multiplicative design means:

• Modular accommodation. Features must not be monolithic. A user should be able to toggle spatial audio off while keeping screen reader support on. Don’t force one win at the cost of another.
• Resource awareness. Every accessibility layer has a cost. An interface that requires sustained vocal output from a user whose attention is partially allocated to breathing isn’t a free resource.
• Intersection as the norm. The CDC estimates that over half of adults with disabilities have more than one. Designing for the intersection isn’t an advanced feature. It’s stable code.
• Transparency over perfection. Sometimes needs conflict. The solution isn’t to declare one need more legitimate. Expose the configuration, accept incompleteness, and let the user manage their own resource allocation.

And beyond design, it means something simpler. It means believing people when they tell you what something costs. When I say that crying triggers a symptom spiral, believe me. When I say that voice commands are harder than typing, believe me. When I say that the accommodation you designed for my blindness doesn’t work with my autism, believe me. When I say that I’m not calm, I’m exhausted, believe me.

The additive model doesn’t believe people because it can’t measure what they’re describing. The multiplicative model starts from the assumption that the person living inside the system knows more about the system’s resource constraints than the person auditing it.

The Math Was Never Going to Balance #

I’m not an edge case. I’m the predictable result of a world that designed for one disability at a time and then encountered a user running multiple high-overhead processes on a system with no reserve capacity.

Every institution that touched me used the additive model. TSBVI added blindness accommodations and increased demands and assumed the math would work. It didn’t. The EXIT program added independence skills and reduced supports and assumed I could absorb the difference. I couldn’t. The nursing home counts whether I can walk, eat, and speak and assumes that’s enough. It isn’t.

The care system counts whether I’m alive. It doesn’t count whether I’m living. The accessibility checklist counts whether the feature exists. It doesn’t count whether using it costs more than it saves. The institution counted whether I was performing independence. It didn’t count what the performance cost.

The math was never going to balance using addition. Two disabilities aren’t twice the difficulty. They’re the square, the cube, the exponential function of resource contention that no checklist was built to capture.

It’s time to change the operator.

Not because it’s comfortable. Because it’s the only way to stop punishing people for the predictable consequences of a system that was never designed to hold them.

In my family, we have words that don’t exist in any medical chart.

Mucus-y. That’s what we call the days when I sit hunched over a bucket, spitting gobs of it out, constantly trying to clear my nose and throat. “I’m having a mucus-y day” tells my mom more than any symptom list could. It means the gastroparesis is flaring, the swallowing is worse, everything is backed up, and I need to be left alone with a bucket and no expectations. A doctor would write “excessive mucus production secondary to gastroparesis and chronic sinus issues.” We say “mucus-y” and we both know what it means.

Whooshy. That’s for when my pulsatile tinnitus is bad. I hear a whooshing sound in sync with my heartbeat, and it usually means my IIH pressure is climbing. “I’m feeling whooshy” means check my meds, watch for other signs, and don’t expect me to think clearly through the noise in my skull. A neurologist would say “symptomatic pulsatile tinnitus consistent with elevated intracranial pressure.” We say “whooshy” and it carries the weight of every hospital stay that started that way.

To squeaker. This one needs context. My dog Squeaker had a habit of peeing on my mom’s things, and my mom had to stop herself from choking him more times than I can count. So we coined a verb. “I’m going to squeaker him” means I’m going to choke someone. It’s dark. It’s funny. It’s the kind of word you build when the alternative is actually losing your mind.

Disabled families build vocabularies like this. Not because we’re creative. Because the clinical words don’t carry the lived weight. “Excessive mucus production” doesn’t capture the shame and exhaustion of sitting over a bucket. “Pulsatile tinnitus” doesn’t capture the dread of knowing what’s coming. And no clinical term captures the specific frustration of loving a twelve-pound dog who keeps peeing on your mom’s new pillows.

These words are our language for experiences that don’t translate into the language systems use. And that gap, the distance between the words we have and the words they want from us, is where most of my life has happened.

The Wrong Story #

People have spent a lot of my life assuming they saw me clearly.

They saw that I was blind. They saw that I was verbal. They saw that I could write, think, learn, use technology, advocate, and explain things. They saw intelligence. They saw faith. They saw opinions. They saw determination.

And because they saw those things, many people assumed they were seeing the whole picture.

They weren’t.

They didn’t see what it cost to appear functional. They didn’t see the executive dysfunction underneath the words. They didn’t see the sensory overload, the fatigue, the swallowing problems, the GI issues, the pain, the non-24 sleep rhythm, the medical instability, the autistic processing load, or the amount of support it takes for me to do basic daily life.

They didn’t see that being able to explain my needs isn’t the same thing as being able to meet them by myself.

They didn’t see that being able to use a computer isn’t the same thing as being safe, fed, clean, medicated, regulated, and supported.

They didn’t see that “independence” was often just another word for “alone with needs no one was helping me carry.”

The wrong story says that if someone is intelligent, articulate, and motivated, they should be able to become independent with enough training.

The wrong story says that if someone can do a task once, they can do it consistently.

The wrong story says that if someone can speak, they can always communicate.

The wrong story says that if someone is young, they don’t belong in long-term care.

I have lived inside that wrong story for a long time. I have tried to make myself fit inside it.

But wanting a version of me to exist didn’t make her real.

The real me can be smart and still need help showering regularly. The real me can write essays and still struggle to feed myself safely. The real me can advocate for disability justice and still need someone else to notice when the structure around me is collapsing. The real me can understand complicated ideas and still need daily support with medications, meals, hygiene, sensory regulation, medical coordination, and basic stability.

Those things don’t contradict each other.

But many systems act like they do.

The Finished Version Is What People See #

Part of how the wrong story survived is that people only saw the end result.

They saw the polished email. The thoughtful explanation. The essay that sounds clear by the time I’m done with it. The fact that I learned to read early, talked before I was six months old, and read a medical dictionary when I was six.

Once people know you can produce polished language, they often start expecting every attempt to be polished on the first try.

What they usually don’t see is how much it costs to get there.

They don’t see me sitting with a blank document and not knowing how to start, even when I know exactly what I want the piece to be about. They don’t see me going over what to say in my head for hours before a conversation. They don’t see me knowing the shape of what I mean, but not being able to get the wording to line up. They don’t see me getting stuck on one sentence because I know it isn’t landing right, but I can’t yet find the version that does.

People mistook the quality of my finished language for the ease of producing it.

Being good with words is not the same thing as words being easy.

That distinction has shaped a lot of my life.

Pressure makes language harder, not easier. “Spit it out” was never a shortcut. It was interference. Being rushed doesn’t pull the words out faster. It adds pressure to a system that is already straining.

And the problem isn’t that I don’t know what I think. The thought exists. It’s just in a form that is not yet language. Or not yet organized language. Or not yet shareable language. The translation step is expensive. Getting from “I know the shape of this” to “here are the words” is often the hardest part.

People saw the words after I had already fought for them. And then they assumed the fight never happened.

Visible in the Wrong Ways #

One of the hardest parts of complex disability is being visible in the wrong ways and invisible in the wrong ways.

Blindness is visible enough that people notice it, but not always in a useful way. Sometimes it makes people flatten me into helplessness. Other times, if I have enough blindness skills, they assume blindness must be the main barrier and everything else is secondary.

Autism is often invisible until my needs become inconvenient.

Chronic illness is invisible until my body refuses to cooperate.

Executive dysfunction is invisible until something doesn’t get done.

The need for care is invisible until the lack of care becomes a crisis.

And then, once the crisis is visible, people may suddenly act shocked that I can’t simply “be more independent.”

That’s the part that hurts.

Because I wasn’t suddenly disabled. I wasn’t suddenly high support. I wasn’t suddenly struggling. The struggle was there. It was just being interpreted through the wrong story.

Systems like clean categories. They like checkboxes. Can you walk? Can you speak? Can you eat by mouth? Can you make decisions? Can you call someone if there’s an emergency?

These questions matter, but they aren’t enough. They don’t capture whether eating by mouth is safe, exhausting, limited, or nutritionally adequate. They don’t capture whether walking across a building causes pain, fatigue, sensory overload, or disorientation. They don’t capture whether a person can make decisions but can’t reliably execute the steps without support.

They don’t capture mucus-y days. They don’t capture whooshy nights. They don’t capture the words we built because the clinical ones weren’t enough.

That’s where people like me fall through. Not because our needs are imaginary. Because our needs are inconvenient to measure.

The One Who Saw Me #

There was one being who never saw the wrong version of me.

The day Squeaker chose me, I was in pain. It was 2015. My mom was riding with a friend’s mother when they saw a tiny puppy walking down the middle of the road, trailing a broken leash with a duct-taped collar. My mom didn’t want to stop. Her friend’s mother insisted. They picked him up, and when they got to our house, her friend’s mother brought him inside and left him there.

My mom told me not to get attached.

But one day she came out into the living room where I was curled up in the recliner on a bad pain day, and he was in my lap. He’d claimed me. And between that and the smile she saw on my face, she couldn’t say no.

I’m autistic. I’m blind. I have low energy. I’m chronically ill. I’m not the person dogs pick. I’m not the person who runs and plays and throws things. I’m the person lying in the recliner on a bad pain day, and that’s the person he walked over to and chose.

He didn’t know he was supposed to prefer someone else. He didn’t know the pattern. He didn’t know the rule. He just walked in, looked at me, and decided.

That was eleven years ago. He’s never changed his mind.

Squeaker was never trained as a service dog. Nobody taught him to alert. Nobody asked him to do anything. He decided. He often senses my flares before I do, and he’ll go and try to tell my mom when he does. When I’m not well, he gets clingier and won’t leave my side. The worse it is, the clingier he gets.

He gave himself a job I never asked him to do. He’s better at noticing when something’s wrong than most humans I’ve met.

He never needed me to perform independence. He never needed me to be less disabled. He never needed me to explain my support needs or justify my care setting or fill out paperwork. He needed me to be there. That’s all. Just there. In the room.

He saw the version of me that was actually there. Not the one people imagined. Not the one systems wanted. The one curled up in pain, and that was enough.

The Separation #

Squeaker is twelve now. He has bad teeth, sore joints, a heart murmur, and hyper-attachment issues. He’s elderly. He’s still sweet, still stubborn, still opinionated.

I’m in a nursing home.

He’s with my mom.

The separation isn’t something I chose. It isn’t something he understands. It’s the shape of what happens when you’re multiply disabled and the care system doesn’t have a place for you that includes the creature who’s been yours for eleven years.

My mom manages the communication between us. She tells me how he’s doing. She sends me updates. He’s getting his vaccinations now, shots underway so that he can come visit me. The visits are the thing I’m holding onto.

But the day-to-day reality is that I’m here and he’s there. He’s with my mom, who’s also going through a lot. He’s old and confused and attached to me and I’m not there. I’m in a facility that wasn’t designed for someone my age, and he’s in a house that doesn’t have me in it.

I think about him under the blankets with just his nose showing. I think about him sitting near my mom and looking at her with that fear-look, the one that means something’s wrong with me, except now something’s wrong with me all the time and I’m not even in the same building.

What It Costs #

People talk about what disability costs you in terms of independence, privacy, career, community, dignity. All of that is real. I’ve written about all of that.

But there’s another cost that doesn’t get talked about as much. The cost of being separated from the living being who knew you before the nursing home. The one who chose you when you were curled up in pain and never un-chose you. The one who gave himself a job because he decided you were worth alerting for.

And there’s a cost that’s harder to name. The cost of living in a world that has words for everything except what you actually experience.

Systems have language for “ambulatory” and “non-ambulatory.” For “verbal” and “non-verbal.” For “independent” and “requires assistance.” They have checkboxes and scales and assessments.

They don’t have language for a mucus-y day. For a whooshy night. For the verb that means “I love this dog so much I want to choke him.” For the feeling of a dog who chose you on a bad pain day and never needed you to be anyone else.

They don’t have language for the gap between who people see and who you are.

They don’t have language for grief that doesn’t come from losing yourself, but from realizing other people were never seeing all of you in the first place.

What It Would Mean to Be Seen #

I don’t want a future based on denial anymore. I want a future based on reality.

Not a hopeless reality. Not a flattened reality. Not a reality where needing care means giving up personhood.

A true reality. One where the question isn’t “How do we make her look independent enough?” but “What support would let her be safe, respected, connected, and herself?”

A reality where being seen means being seen in my vocabulary, not just theirs. Where a mucus-y day is understood as a real medical event, not an inconvenience. Where a whooshy night is a warning sign, not a complaint. Where the dog who chose me is recognized as part of what keeps me alive, not a luxury to be set aside when care settings change.

A reality where the words that don’t translate finally get heard.

Squeaker never needed me to translate. He never needed me to put my experience into language he could process. He just showed up, climbed into my lap, and stayed.

The door is closed right now. I’m here. He’s there. And somewhere on the other side of it, a small dog is making the sound he was named for, waiting for someone to open it.

I know how he feels.

I’ve been waiting for someone to open that door my whole life. Not the door to the room. The door to being seen. All the way. In the vocabulary that actually fits.

I’m still here. I’m still the version of me who’s actually here. And I’m still waiting.

I’ve written before about how no community accepts my whole stack. Tech spaces don’t know what to do with a blind, autistic, chronically ill woman who builds AI agents. Disability spaces don’t know what to do with someone whose support needs are higher than the room was built for, or with someone who holds conservative beliefs. Faith spaces are usually conservative, so the belief fits, but they don’t know what to do with disability. Sometimes you get told God will heal you if you pray, with the implication that if He hasn’t, you’re doing something wrong. Other times you’re treated as something to learn about, not a member to welcome. People ask questions, you answer, they move on. Every space I enter runs me through a filter, and something always gets bounced.

I thought home was different. Home wasn’t a community I had to pass a filter for. Home was just home.

But home had become something else entirely. My mom was exhausted. I was exhausted. We were trying to hold together a level of care that was too much for one overwhelmed family caregiver, especially in a rural area where outside help was difficult or impossible to get reliably.

The home situation had become unsafe and unsustainable. And the care system, it turns out, is just another space that doesn’t accept the whole stack. It just filters you differently. Instead of bouncing you on disability or faith or AI use, it bounces you on the gap between what it can measure and what you actually need.

The Crisis Didn’t Create the Need #

I didn’t enter nursing home care because I had some carefully designed long-term plan. I entered because I needed to get out of a bad situation quickly.

At first, nursing home placement felt like an emergency option. Not ideal. Not peaceful. Not the setting I would’ve imagined for myself.

But once I was here, something started becoming clearer: maybe I didn’t only need a temporary escape from a crisis. Maybe I actually need full-time, long-term care.

That’s been a heavy realization. But it’s also been strangely clarifying.

When you’re disabled, especially when your disabilities are complex and don’t always look the way people expect, there’s a lot of pressure to keep proving that you’re “capable.”

People see intelligence and assume independence. They see communication skills and assume daily functioning. They see youth and assume stamina. They see someone who can use a computer, advocate, write, study, or manage complicated information, and they assume that person should also be able to reliably manage meals, medication, hygiene, transportation, appointments, symptom flares, executive function, incontinence, sleep disruption, pain, fatigue, and crisis planning.

But those aren’t the same kind of capacity. Being able to think doesn’t mean my body can keep up. Being able to explain my needs doesn’t mean I can meet them by myself. Being an adult doesn’t mean I stop needing care.

For a long time, I internalized the idea that needing this much help meant something was wrong with me morally. Maybe I was lazy. Maybe I wasn’t trying hard enough. Maybe I should be able to do more because other people seemed convinced I could.

But the truth is that my needs were real before the crisis. The crisis just made them impossible to keep hiding.

What Full-Time Care Actually Means #

When people hear “long-term care,” they may picture only one kind of person or one kind of situation. They may imagine someone elderly, confused, or completely unable to communicate.

That’s not my story. I’m blind. I’m autistic. I have chronic illness, fatigue, pain, GI and swallowing issues, sleep disruption, and a body that doesn’t run on a predictable schedule. I need help with daily care in ways that are practical, physical, and ongoing.

Full-time care means medication support. It means meals I can actually access and tolerate. It means help with showers and hygiene. It means incontinence support without shame.

It means having someone available when my body crashes, when symptoms flare, or when basic tasks become too much.

And it means not depending on one family member to be caregiver, advocate, transportation coordinator, emotional support, crisis manager, and backup plan all at once.

That’s not childish. That’s not failure. That’s support.

What the System Doesn’t Count #

Here’s what the care system knows how to measure: Can you walk? Can you eat by mouth? Can you speak? Can you use the bathroom? Can you make decisions? Can you call someone if there’s an emergency?

Here’s what it doesn’t measure: the kitchen you can’t use safely. The routine you can’t control because someone else sets the schedule. The food you can’t eat because the cafeteria doesn’t account for gastroparesis, sensory issues, or swallowing problems. The privacy you lose when someone walks into your room without knocking. The autonomy that disappears when your day is structured around shift changes instead of your needs. The technology you need to function that doesn’t fit their idea of what a patient should have.

These aren’t luxuries. They’re survival needs. They’re the things that keep a person alive in ways that go beyond medical stability.

A kitchen isn’t just a room with appliances. It’s the ability to eat when your body finally lets you, not when the tray arrives. It’s the ability to make something you can actually swallow without gagging. It’s the ability to try a new safe food when the old one stops working. When you lose access to a kitchen, you lose the ability to feed yourself on your own terms, and for someone with GI issues and sensory needs, that’s not a minor loss. It’s a daily crisis managed by someone else’s schedule.

A routine isn’t just a preference. When you’re autistic, routine is regulation. It’s the structure that keeps sensory overload from becoming a meltdown. It’s the predictability that lets your nervous system rest. A facility routine is someone else’s routine. It’s built around staffing patterns, not your sensory needs. It’s waking up when the aide comes in, not when your body is ready. It’s eating when the dining room is open, not when you can tolerate food.

Some things, this facility has gotten right. My non-24 sleep rhythm means some nights I can’t sleep at all, and some days I can’t stay awake. Having my own room has meant I can follow my body’s clock instead of fighting it. Others stay up at night too. No one has called it noncompliance. That shouldn’t be remarkable. It should be the baseline. But I know that in many facilities, it isn’t. The fact that this place has been good about my sleep doesn’t mean the system accounts for sleep. It means I got lucky with this setting, and luck shouldn’t be what determines whether your nervous system gets to rest.

Then there are the things the system doesn’t even know to look for.

When we were looking at getting me in here, they almost didn’t let me bring my computer because it’s a desktop. It doesn’t have a monitor or speakers except the internal one and the Bluetooth speaker I use. It’s a desktop tower, not a laptop, and that didn’t fit their idea of what a resident’s technology should look like. We had to ask. My mom and I were both prepared to say no if they didn’t allow it.

For me, a computer is communication, regulation, learning, entertainment, and the ability to keep some independence. I have enough difficulty with a phone that just using that isn’t realistic. A desktop isn’t a luxury for me. It’s how I talk to the world. It’s how I write. It’s how I manage my care, my schedule, my research, my community. Taking it away isn’t removing a device. It’s removing my access to everything that lets me be a person instead of a patient.

The system counted whether I needed a bed. It almost didn’t count whether I needed my computer.

And then there was yesterday. I almost got a roommate.

They said they wouldn’t do it if it would upset me. That sounds like a choice. It wasn’t.

I’ve been in institutions before. I know what happens when you say no. You get called difficult. You get called noncompliant. You get remembered as the one who caused problems. Maybe nothing happens right away, but you know it changes how people see you, and in a place where you depend on those people for everything, that’s not a risk you can afford.

So I said yes. I thought I’d give it a try.

And then the CNA left my room, and I started to cry.

Not because I was trying to make a point. Not because I was being dramatic. Because I’d just agreed to give up the one space in this place that’s mine, and my body knew before my brain caught up that I couldn’t do it. The noise. The unpredictability. The loss of the one room where I control my environment. The fact that my computer setup, my communication, my regulation, my entire way of existing in this place depends on having a room that works for my sensory needs.

They found another room for the other person. I kept my room. It got fixed.

But here’s what didn’t get fixed: a system that asks you whether something is okay when the answer no isn’t safe to give. A system that calls it a choice when one option comes with consequences and the other doesn’t. A system where compliance feels like survival and then compliance costs you the one thing you needed to survive.

It counts bed availability. It doesn’t count sensory compatibility. It counts whether you agreed. It doesn’t count what the agreement cost you.

The system counts whether I’m fed. It doesn’t count whether the food is tolerable. It counts whether I’m clean. It doesn’t count whether the shower happened at a time that didn’t cost me the rest of the day. It counts whether I’m safe. It doesn’t count whether I’m regulated, rested, or able to be a person instead of a patient.

These are the things the system doesn’t count. And they’re the things that make life livable.

Relief as Information #

One of the hardest parts of this has been admitting that some parts of being cared for feel like relief.

Not because this setting is perfect. It’s not.

A nursing home may not be the right long-term setting for me. I’m younger than many residents. I’m blind. I’m autistic. I need access to technology, communication, privacy, appropriate food and nutrition, and some level of self-direction. I need care that understands disability without treating me like a child.

Those things matter. But even with the imperfections, I’ve had to notice something important.

When meals, meds, showers, and daily care aren’t entirely on me and my mom, my nervous system understands the difference. My body understands the difference.

The relief itself is information. It tells me that the old situation wasn’t just difficult. It was beyond what we could safely sustain. It tells me that I wasn’t weak for struggling. It tells me that my mom wasn’t failing because she couldn’t keep doing everything. It tells me that the level of support I need is bigger than what our home situation could provide.

Letting Go of Being My Own Advocate #

There’s a particular kind of grief that comes with stopping the job of being your own full-time care coordinator.

For years, I tracked my own health. I logged symptoms. I managed medications. I coordinated appointments. I researched conditions. I prepared for every doctor’s visit like I was going into a debate, because I was. I knew my body better than anyone, and I had to, because nobody else was going to hold the whole picture.

There’s a pressure in the disability world to treat self-advocacy as proof of competence. If you can explain your needs, you should be able to meet them. If you can research your conditions, you should be able to manage them. If you can coordinate your care, you must not need that much care. The ability to understand your needs gets treated as evidence that you don’t really have them.

That’s backwards. Understanding your needs is not the same as being able to meet them. Knowing what’s wrong is not the same as being able to fix it. Being able to explain your condition to a doctor is not the same as being able to manage that condition every day, alone, while also managing everything else.

The pressure to be your own advocate isn’t just exhausting. It’s a trap. It keeps disabled people performing competence in order to prove they’re worthy of help, while the performance itself is used as evidence that they don’t need it.

When I entered long-term care, I had to start letting go of some of that. Not all of it. I’m still my own best source of information about my body. I still advocate. I still speak up. But I’m not the only person responsible for my care anymore, and that shift has been both a relief and a grief.

It’s a relief because the job was impossible. One person, especially a disabled person with limited energy and unreliable executive function, cannot be a full-time caregiver for herself while also being a person. The math doesn’t work. The hours don’t exist. The energy isn’t there.

It’s a grief because being your own advocate was also proof that you were trying. It was the thing you could point to when someone questioned whether you really needed help. “Look at how hard I’m working. Look at how much I’m managing. Surely you can see I’m not exaggerating.” When you stop, you lose that evidence. You become someone who receives care instead of someone who fights for it, and the world treats those two roles very differently.

Letting go of self-management isn’t giving up. It’s recognizing that the job was never sustainable, and the fact that I did it for as long as I did wasn’t proof that I could keep doing it. It was proof that I was willing to run myself into the ground trying.

The Setting and the Care Level Aren’t the Same Thing #

This is the distinction I keep coming back to: a nursing home may not be the right setting. But full-time long-term care may still be the right level of support. Those aren’t the same question.

The wrong setting doesn’t mean the care need is wrong. A facility can be safer than home in some ways and still not be fully appropriate. It can provide structure and support while also revealing gaps. It can be a bridge, not a destination.

I needed to get out. I needed more care. I still need a setting that fits me better.

I need support that recognizes me as an adult disabled person with my own mind, faith, preferences, skills, and goals. I don’t need to be warehoused. I don’t need to be infantilized. I don’t need people assuming that because I need help with daily living, I no longer need autonomy. I need care that makes life possible.

The Cost #

Being cared for doesn’t make me less of an adult. It doesn’t erase intelligence, faith, personality, preferences, boundaries, or calling.

I’m still me. I’m still a student. I’m still a writer. I’m still a Christian. I’m still an advocate. I’m still someone who thinks deeply, loves deeply, learns constantly, and wants to build something meaningful with my life.

I also need help.

Those truths have to coexist, because pretending otherwise nearly broke us.

But there’s a cost to being in a setting that counts the wrong things. A cost to being measured by checkboxes that were never designed to capture your life. A cost to losing the kitchen, the routine, the sleep schedule, the privacy, the dog, the ability to eat on your own terms, the ability to be a person instead of a patient.

The system counts whether I’m alive. It doesn’t count whether I’m living.

The crisis got me here. The care need was already real. Naming that is the first step.

But the next step is harder. The next step is building something that counts what actually matters. Not just whether I can walk or eat or speak. Whether I can feed myself on my own schedule. Whether I can sleep when my body lets me. Whether I can keep my dog. Whether I can cook when the GI tract cooperates. Whether I can be alone when I need to be. Whether I can be with people when I want to be. Whether I can build a life, not just survive a placement.

Those are the things the system doesn’t count. Those are the things that make care worth receiving.

I’m not asking for a perfect setting. I’m asking for one that knows I’m a person, not a checkbox. One that counts the kitchen and the routine and the dog and the sleep schedule and the privacy and the food I can actually eat.

One that counts what keeps me alive, not just what keeps me breathing.

That shouldn’t be too much to ask.

But right now, it is.

It was 2015. My mom was riding with the mother of one of her friends when they saw a tiny puppy walking down the middle of the road, trailing a broken leash with a duct-taped collar. My mom didn’t want to stop. Her friend’s mother insisted. They picked him up.

The other woman already had little dogs. We didn’t have many animals and didn’t want more, so my mom assumed the woman would take him home. Instead, when they got to our house, her friend’s mother brought him inside and left him there. She was done with the story after that.

My mom told me not to get attached. She said we weren’t keeping him.

But one day she came out into the living room where I was curled up in the recliner on a bad pain day, and he was in my lap. He’d claimed me. And between that and the smile she saw on my face, she couldn’t say no.

She was wrong about not keeping him.

He was wrong about very few things in his life. He was wrong about the possum being a horse. He was wrong about Peep the chicken being a threat to his existence. He was wrong about closed doors being a personal attack.

He was not wrong about me.

My First Dog #

We had dogs growing up, but I have three able-bodied younger sisters, so you can guess who those dogs gravitated toward. Which basically meant I never really had one. I was the one who liked dogs but wasn’t chosen by dogs. I accepted it the way you accept any pattern that repeats often enough to feel like a rule.

Squeaker was my first.

I’m autistic. I’m blind. I have low energy. I’m chronically ill. I’m not the person dogs pick. I’m not the person who runs and plays and throws things. I’m the person lying in the recliner on a bad pain day, and that’s the person he walked over to and chose.

He didn’t know he was supposed to prefer someone else. He didn’t know the pattern. He didn’t know the rule. He just walked in, looked at me, and decided.

That was eleven years ago. He’s never changed his mind.

How He Got His Name #

He wasn’t fixed, which meant he went around humping everything. He flipped a teddy bear over and tried it on that. He even got my arm once.

My mom asked me to name him, but I’m horrible with names and couldn’t come up with one. She jokingly suggested “Chester the Molester.” I said no.

Then we heard his high-pitched squeaky bark and his sneezes, and that’s how we got Squeaker.

He was all ears back then. This tiny puppy with big bat ears. Black fur, tan markings, and now that he’s old, white and grey coming in around his muzzle and eyebrows. He’s a miniature pinscher. Twelve pounds of opinion.

What He Is Like #

Squeaker is sweet, dramatic, stubborn, brave, clingy, bossy, and deeply loyal. He is a tiny roadside goblin-angel dog, and I mean that with total affection.

He burrows. Under blankets, under laundry, into any soft dark space he can find. If there’s a pile of laundry or blankets on the floor, on a couch or bed, or in a basket, and he can get to it, that’s where he’ll be. He tunnels in until only his nose is exposed. He doesn’t like being fully covered. He needs to see out, or at least smell out.

My mom has nearly thrown him in the washer several times. Once, we couldn’t find him. We were in and out of the house calling him, getting worried. My mom had been getting ready to go to the laundromat because our washer wasn’t working, and she’d put clothes in the car. She opened the car door, and guess who popped his head out?

He hunts. He used to watch for fleas, then bite at and eat them. He liked going outside and hunting for things. Once I heard him up under our trailer. He had something cornered, or it had him. You could tell from his bark he was terrified, but did he back down? No. Someone had to go get him.

He rode a possum. This was back in Santa Fe, Texas. Someone opened the front door to check on something outside, and there was a big possum near the steps. Squeaker jumped on its back like he was trying to ride it. Freaked it out and it ran off. He was maybe eight pounds. The possum was significantly larger. None of this mattered to him.

He’s afraid of exactly two animals that I know of. One is Peep, a chicken. They got into it several times. Peep trying to peck him, him growling and snapping, and my mom having to rescue him. The other is Pudge, my mom’s old miniature pinscher. Pudge was old and blind but didn’t put up with anything. Pudge secretly loved him, but Squeaker was afraid of her anyway. I can’t explain this. Squeaker has his reasons and he’s not sharing them.

He refuses dog stairs. We tried some of those stairs for dogs so he could get on the bed without jumping. He won’t use them. He jumps. When he was little, he was very clumsy, often landing badly, and you could hear that it was a bad landing. He does better now, but I often wish he wouldn’t jump. He still won’t use the stairs. He will jump. He will make it. He will look at you as if to say the stairs were an insult.

When you hold him, he often wants to stand on your arms or hands so he can have control and jump down when he wants. When you try to hold onto him, he doesn’t like it. I’ve tried to hug him or hold onto him, and he always squirms and tries to get out or stand on me. He’s not a cuddle-in-your-arms dog. He’s a burrow-next-to-you dog. There’s a difference.

He considers closed doors a personal attack. A closed door isn’t a boundary to Squeaker. It’s an injustice. For inside doors, he’ll paw at it, sometimes hitting it harder and harder, even jumping and slamming it. When he’s locked outside or gets himself locked in somewhere like a bathroom, he paws at the door and barks his demanding “let me out” bark until someone opens it or until he decides the door has won this round and leaves to find something else to be offended by.

Squeaker and My Mom #

My mom and Squeaker are both stubborn, and they had a complicated relationship.

He had this bad habit of peeing on things, almost always her stuff or something new in the house. It happened enough that my family coined a verb: to “squeaker” someone. It means to choke them. Because my mom had to stop herself several times from choking him over the peeing.

Back when I was Mormon, I used to worry when I’d leave for church that she’d kill him while I was gone. I once asked her, before I left, not to kill my dog. She didn’t. She just had to stop herself a few times. They survived each other.

The Job He Gave Himself #

Squeaker was never trained as a service dog. Nobody taught him to alert. Nobody asked him to do anything. He decided.

He often senses my flares before I do, and he’ll go and try to tell my mom when he does. This last time, before one of my recent hospital stays, he was looking at her scared, like he was begging her to help me.

When I’m not well, he gets clingier and won’t leave my side. The worse it is, the clingier he gets. He’s so loving and sweet with me, and he uses his paws like little hands. When he needs or wants my attention, he paws at me, climbs at me, or, I swear, deliberately steps on my keyboard.

He appointed himself my medical alert dog. He gave himself a job I never asked him to do, and he’s done it for years. He’s better at noticing when something’s wrong than most humans I’ve met.

The Night He Died and Came Back #

At one point I was living in a travel trailer outside the house. I think it had something to do with severe black mold my mom was trying to get rid of and how it was affecting me.

Squeaker got outside and was hit by a car. My mom heard it, and I think she heard him cry. I didn’t. She came to get me, saying he was dying. She wanted to give me a chance to say goodbye.

When she put him in my lap, he was very still, bleeding from the mouth. We thought he was dying.

I had to leave because I wasn’t feeling too well. I think I needed food but was too upset to eat. My mom laid him down in an open kennel. After a while, she tried to give him some ham.

He perked up. He ate the ham. He left the kennel. He went potty.

My mom says he came back for me. She’s called him “Angel dog” ever since.

The Day He Went Missing #

Once, when my mom was unable to care for me for a while, Squeaker went missing. We looked but couldn’t find him anywhere.

It was the same day as the Santa Fe school shooting, and we lived in Santa Fe then. I put posts on Facebook, hoping someone would find him. A woman found him, took him to the vet, and got him his shots and a new collar. I was able to get him back.

He has no attention span, and we weren’t far from the school. I think he got outside, saw something interesting happening, and went off to investigate, maybe not intending to wander so far.

The relief I felt when we found him was the kind of relief that tells you something about how much you’ve already lost and how much you can’t afford to lose again.

The Dead Cat #

We had a cat, Scratch, who died. I can’t remember why exactly, though I do remember him hurting a lot of the other cats because he was aggressive and trying to get to the females all the time.

My mom, for some reason I also can’t remember, tried to burn or cremate him rather than bury him. The remains didn’t burn fully the first time, and there was still some left in the burn pile. Mom caught Squeaker eating it.

For a long time after that, he’d growl at the cats, and they’d just move, parting like the Red Sea, as my mom said. We joked that he was telling them to get out of his way, that he ate cat.

I’m not saying there’s a lesson here. I’m saying it happened.

The Separation #

Squeaker is twelve now. He has bad teeth, sore joints, a heart murmur, and hyper-attachment issues. He’s elderly. He’s still sweet, still stubborn, still opinionated, still afraid of chickens and blind min pins. He still burrows under blankets and leaves his nose out. He still won’t use the dog stairs.

I’m in a nursing home.

He’s with my mom.

The separation isn’t something I chose. It isn’t something he understands. It’s the shape of what happens when you’re multiply disabled and the care system doesn’t have a place for you that includes the creature who’s been yours for eleven years.

My mom manages the communication between us. She tells me how he’s doing. She sends me updates. He’s getting his vaccinations now, shots underway so that he can come visit me. The visits are the thing I’m holding onto.

But the day-to-day reality is that I’m here and he’s there. He’s with my mom, who’s also going through a lot. He’s old and confused and attached to me and I’m not there. I’m in a facility that wasn’t designed for someone my age, and he’s in a house that doesn’t have me in it.

I think about him under the blankets with just his nose showing. I think about him making the squeaker sound at a closed door. I think about him sitting near my mom and looking at her with that fear-look, the one that means something’s wrong with me, except now something’s wrong with me all the time and I’m not even in the same building.

What It Costs #

People talk about what disability costs you in terms of independence, privacy, career, community, dignity. All of that is real. I’ve written about all of that.

But there’s another cost that doesn’t get talked about as much. The cost of being separated from the living being who knew you before the nursing home. The one who chose you when you were curled up in pain and never un-chose you. The one who gave himself a job because he decided you were worth alerting for.

Squeaker never needed me to perform independence. He never needed me to be less disabled. He never needed me to explain my support needs or justify my care setting or fill out paperwork. He needed me to be there. That’s all. Just there. In the room. So he could burrow under the blanket next to me and leave his nose out and know I was close.

I’m not close right now.

The nursing home is the safest option available to me. I’ve written about that too, about how the safest option can still be wrong in other ways, about how safety and belonging aren’t the same thing.

This is another way it’s wrong. I’m safe. I’m separated from my dog.

He’s twelve. He has a heart murmur. He has bad teeth and sore joints. He doesn’t have unlimited time. I know this. I think about it more than I say.

The shots are underway. The visits are coming. I’m holding onto that the way he holds onto a blanket, with everything he has, nose out, breathing, waiting.

What I Want People to Understand #

When we talk about long-term care, we talk about medical needs, safety, staffing, and facility quality. Those things matter. I’m not dismissing them.

But we also need to talk about what gets left behind. The dog. The cat. The creature who chose you and who doesn’t understand why you left. The relationship that doesn’t fit into a care plan but is part of what keeps you alive.

I want a future where my dog can be with me. I want a group home that has room for a twelve-year-old miniature pinscher with a heart murmur and bad teeth and a habit of peeing on people’s belongings. I want the care system to understand that Squeaker isn’t just a pet. He’s my medical alert dog, my companion, and the one living being who’s never required me to be anyone other than who I am.

He chose me. I want to be able to choose to be with him.

That shouldn’t be too much to ask.

But right now, it is.

He’s still there. My mom’s still there. I’m here.

The door is closed. And somewhere on the other side of it, a small dog is making the sound he was named for, waiting for someone to open it.

I know how he feels.

I learned a lot. I finished Python, Linux, Git, object-oriented programming, functional programming, and multiple projects. I made real progress.

I also hit a point where something became hard to ignore.

The farther I got, the more coding felt like trying to think through a blanket woven from executive dysfunction, fatigue, and brain fog. The concepts often made sense. The problem was holding enough moving pieces in my head long enough to translate them into working code.

That distinction matters. As someone living with multiple disabilities and chronic illness, I have to think carefully about what kinds of work I can sustain, not just what I enjoy.

Where It Started To Break Down #

One recent lesson asked me to build an agent loop. Not a huge app. Just one part of the system.

I had to track message history, tool calls, tool results, call IDs, ordering rules, iteration limits, and SDK-specific types all at once.

I could explain what the code was supposed to do.

But actually coordinating everything in real time was mentally exhausting. I could feel the strain building before I had even been working that long.

And it wasn’t only this assignment. For a while, I had noticed that each new lesson seemed to demand more of the exact kind of sustained concentration and working memory that executive dysfunction, fatigue, and brain fog make difficult for me. The work was becoming progressively harder and more painful, even when I understood the underlying concepts.

The agent loop was the point where I had to stop and be honest with myself.

This was not just “I need to try harder.”

It was “this way of working is becoming cognitively expensive in a way my body and brain might not be able to sustain.”

What This Is Not #

This isn’t me saying Boot.dev is bad. In fact, I think Boot.dev succeeded. It gave me enough experience and technical foundation to understand backend development from the inside and make an informed decision instead of wondering “what if?” for years.

Sometimes “enough” is not finishing every module in a path. Sometimes enough is learning enough to make a better decision.

What I Learned Anyway #

I now have a much stronger technical base than I did before.

• I can work in Linux and Git with confidence.
• I can read Python and reason about application structure.
• I understand APIs, state, and how tool-calling systems work.
• I can evaluate AI-generated code with more judgment.
• I can communicate with developers more clearly.

None of that is wasted.

Why I Am Changing Direction #

My deeper goal has never been “be a backend engineer at all costs.”

My goal is to help make technology better for disabled people, especially people living with multiple disabilities at the same time.

I can do that in more than one way.

Right now, a better fit looks like this:

• accessibility-focused technical writing
• advocacy grounded in lived experience
• usability and accessibility feedback
• AI-assisted prototyping of small tools
• collaborating with developers without requiring myself to do every implementation detail alone

That still uses the technical skills I learned. It just uses them in a way that’s more sustainable for me.

What I Want To Build Next #

AI has changed how I think about building software. A year ago, I assumed that if I wanted to create a tool, I needed to become the person writing every line of code. Today, I see another possibility. I can contribute by defining the problem, making design decisions, testing accessibility, and guiding the implementation while using AI as a collaborator rather than trying to do everything myself.

One project I’m considering is an accessible merge game designed for keyboard and screen-reader use from day one.

That kind of project feels aligned with both my interests and my limits. I can use AI for implementation support while focusing on what I do best: defining the real user needs, shaping the design, testing usability, and deciding whether it actually works.

The Honest Part #

I’m still frustrated.

This isn’t the first education path I’ve had to rethink because of health and access barriers. That grief is real.

But this change doesn’t mean I’m back at zero.

If anything, I have a clearer picture now:

• what drains me
• what energizes me
• what kind of work is worth my limited cognitive and physical energy

I’m not giving up on technology.

I’m choosing a direction I can actually live in. I don’t know exactly where that path leads yet, but for the first time in a while, it feels like it’s pointing toward work that fits both my interests and my life.

The First Barrier: A Bible I Couldn’t Read #

I grew up in a nondenominational Christian home. My mom made sure my siblings and I knew we were Christians, and when we were little, she would faithfully drop us off at Sunday school. Faith was always present in our lives, but I never really built a personal, daily habit of reading the Bible for myself.

Part of the reason was purely practical. As a blind child, the only complete Bible I owned was a massive King James Version in Braille, spanning roughly forty heavy volumes. Reading Braille is naturally slower and much more physically demanding than reading print or listening to audio, and trying to untangle the archaic language only added to the struggle. Eventually, I just stopped trying very much. For years, I simply assumed that this exhausting, frustrating barrier was what reading the Bible was supposed to feel like.

Vulnerability and Finding Modern Translations #

As I got older, a deep desire grew in me to find a translation I could actually understand. I wanted direction, and I wanted to know Scripture for myself, but that season of searching left me incredibly vulnerable. At a time when I was desperately looking for answers and my mom wasn’t around as much to guide me, missionaries from The Church of Jesus Christ of Latter-day Saints reached out. Because I was searching for spiritual clarity, their message resonated with me while I was still trying to figure out where I stood.

Looking back, I’m grateful that season taught me something important: I needed to know Scripture for myself, in a language my brain could actually process.

Ironically, it wasn’t until I began taking classes at Colorado Christian University that I discovered modern, highly readable Bible translations even existed. Through my coursework, I was introduced to modern translations like the New Living Translation (NLT), and I eventually settled on the Christian Standard Bible (CSB). Around the same time, I began using the YouVersion app. Having readable translations in an accessible digital format removed much of the physical friction of using a forty-volume Braille Bible. For the first time in my life, I wasn’t fighting the language or the format on every single page. I could focus on what the text was actually saying.

How Study Became a Project #

However, university life introduced a brand-new obstacle. CCU required us to learn how to use academic Bible study tools such as commentaries, Bible dictionaries, concordances, and cross-references. Those tools are incredibly valuable for a degree, but without realizing it, I slowly blurred the lines between two very different things: my university coursework and my personal time with God. I started treating rigid academic requirements as the baseline requirement for daily fellowship with Christ.

My quiet time slowly morphed into an exhausting, multi-step project. I told myself I had to read the passage, open multiple tools, compare cross-references, analyze translations, and document absolutely everything in my notes. On paper, it looked like a flawless, deeply disciplined spiritual routine. In reality, the sheer weight of it meant I often didn’t start at all.

Living with multiple disabilities and chronic illnesses means my energy levels change from day to day. Brain fog, executive dysfunction, fatigue, and physical pain are my daily reality, and every single extra step in a routine costs precious mental currency. Eventually, I had to admit the painful irony: the academic tools meant to help me understand Scripture had become the ultimate barriers keeping me from opening it.

Unlearning What Prayer Looks Like #

I didn’t stop valuing deeper study; I just stopped treating it as the minimum entry fee to spend time with God. I began separating the two on purpose. Today, my goal is simple consistency rather than complexity. The deeper commentaries and dictionaries are now reserved strictly for school mode or high-energy days.

But simplifying my Bible routine also forced me to confront another barrier I had to unlearn: the belief that prayer must be spoken out loud.

Because of my disabilities, speaking out loud is not always easy for me. For a long time, because I thought vocalizing my prayers was a strict rule, the physical effort required would cause me to avoid prayer entirely. I’ve had to learn that God is not blocked by a format. Prayer can be spoken, whispered, typed out on a keyboard, or held in absolute silence. This realization removed a massive weight from my chest.

Scripture reminds us that God knows our hearts and what we need before we ask Him. Realizing that helped me understand that prayer isn’t limited to spoken words. Today, some of my prayers are spoken. Others are completely silent. What matters isn’t the format. It’s that I’m bringing my heart to God.

Grace-Paced Faithful Routines #

Today, my daily routine is intentionally small and flexible, shifting dynamically with what my body and mind can handle:

• On very low-energy days: I listen to the guided scripture in the YouVersion app.
• On low-energy days: I listen to the guided scripture and do the guided prayer.
• On medium-energy days: I listen to the guided scripture, do the guided prayer, and read the day’s readings from my reading plan, currently Devotions on F.I.R.E.
• On high-energy or school days: That’s when I bring out the heavy tools, related passages, and structured academic study.

The ultimate goal of my day is no longer to complete a flawless, multi-step checklist. The goal is simply to meet with God exactly where I am today.

Closing #

Looking back, I realize this post has really been about removing barriers. First it was a Bible translation I couldn’t understand. Then it was an academic study routine that had become too complicated for everyday life. Then it was the mistaken belief that prayer only counted if I spoke it aloud. One by one, God has been teaching me to remove those barriers. I still value theology, deep study, and learning. Those things matter. But I’ve stopped believing they are prerequisites for spending time with Him. If keeping things simple is what allows me to consistently open His Word, then simple isn’t settling. It’s faithfulness.

Come to me, all of you who are weary and burdened, and I will give you rest. — Matthew 11:28 CSB

A lot of able-bodied people, and even some disabled people who don’t live with constant fatigue, don’t realize that.

My mom has said she doesn’t know how I’m not angry about my health issues and everything I’ve been through. I get why she says that. From the outside, maybe I look calmer than expected. Maybe I don’t sound angry enough. Maybe I don’t cry when people think I should.

But calm isn’t always peace. Sometimes calm is exhaustion.

Feeling It vs. Performing It #

I can be angry and still not have the energy to show it in ways people recognize.

A lot of people think anger has to look loud: yelling, cursing, pacing, slamming doors, sharp tone, lots of motion. All of that costs energy.

I don’t have that kind of energy most days. That doesn’t mean I’m fine. It means my body is already running on almost nothing, and showing emotion still has to fit inside that budget.

I’m not less angry. I’m less resourced.

Why I Sometimes Avoid Crying #

For some people, crying is release. For me, crying can trigger a symptom spiral.

If I cry, I can end up with more mucus, throat and nasal drainage, and sometimes a headache. Then I might be leaning over a bucket spitting for hours, curled up in bed with a headache, or both.

So if I try not to cry, that’s not emotional denial. It’s symptom management. It’s me doing the math: if I cry now, what will it cost me later?

What I Wish More People Understood #

When you’re chronically ill, emotional expression isn’t free. It’s physical.

It uses breath, muscle tension, nervous system capacity, focus, and recovery time. It can worsen pain, fatigue, headaches, and other symptoms.

So if I seem flat, quiet, or “too calm,” that doesn’t mean I don’t care. It may mean I care a lot and I’m trying not to crash.

Quiet isn’t the same as okay. Not yelling isn’t the same as acceptance. Not crying isn’t the same as not hurting.

That matters because people can misread quietness as agreement, calmness as resilience, and flatness as indifference. But sometimes the person who looks like they’re underreacting is actually doing everything they can to avoid making their body worse.

What Helps Instead #

If someone seems quiet or shows less visible reaction than you expected, try not to demand a performance.

• Do you want to talk about it, or would that take too much energy?
• Would practical help be better right now?
• Do you need me to just believe you?

Sometimes the kindest thing you can do is believe the feeling without needing to see a dramatic display of it.

Sometimes the most honest thing I can say is:

I’m not calm.

I’m exhausted.

I write about faith, disability, accessibility, technology, chronic illness, caregiving, games, learning, autonomy, and the reality of being a blind, autistic, chronically ill adult trying to build a meaningful life.

Not every post is for every reader, and that’s okay.

Topics Are Labeled Clearly #

I use titles, descriptions, categories, and tags to help readers decide what they want to read.

If a post is about Christianity, theology, disability, long-term care, accessibility, gaming, technology, or anything else, I try to make that clear before the article begins.

That gives readers a choice.

You’re welcome to read what interests you and skip what doesn’t.

This Site Is Not a Debate Forum #

I do not host comments on this site.

That’s intentional.

Some of what I write is personal, vulnerable, theological, disability-centered, or connected to real-life care needs. I’m willing to share those things publicly, but I’m not obligated to provide an instant reaction box under every post.

If you want to contact me respectfully, you can use the contact page or reach out through one of the social links I provide.

Reader Agency Matters #

I believe readers are responsible for their own choices.

If a post is clearly labeled as a faith reflection and you don’t want to read religious content, you don’t have to read it.

If a post is clearly about chronic illness, caregiving, long-term care, or disability, and that’s not something you want to engage with, you can skip it.

If a post is about games, technology, or learning, and that’s not your interest, you can move on.

Clear labeling is my responsibility.

Choosing whether to keep reading is yours.

I Don’t Censor My Whole Self Here #

In a lot of spaces, I have to translate myself.

I have to make disability easier to understand, faith less complicated, illness less uncomfortable, accessibility less urgent, or my life less complex.

This site is different.

Here, I allow more of my real context to exist in one place. I’m a Christian, a student, a writer, a disabled adult, an accessibility advocate, a technology learner, a gamer, and a person navigating major care needs.

Those parts of my life aren’t separate boxes. They overlap.

This site reflects that.

Disagreement Is Allowed; Hostility Is Not Entitled Access #

People are allowed to disagree with me.

People are allowed to dislike a post, skip a topic, or decide this site isn’t for them.

What they are not entitled to is direct access to my energy, my inbox, my nervous system, or my personal space.

Respectful contact is welcome.

Hostility, bad-faith argument, mockery, harassment, or attempts to turn my personal site into a fight are not.

Why This Site Exists #

This site exists so I can have a stable place to write, document, reflect, build, and connect.

It’s part portfolio, part blog, part advocacy archive, part learning log, and part home base.

Most of all, it’s mine.

Thank you for reading with care.

I’m currently navigating a major medical, caregiving, accessibility, and financial crisis. I’m blind, autistic, chronically ill, and mostly dependent on accessible technology for communication, work, school, medical coordination, advocacy, and staying connected.

My GoFundMe helps with urgent needs such as:

• basic living expenses during medical instability
• medical-related costs and supplies
• nutrition needs, including liquid medical food shakes
• transportation and care-related expenses
• maintaining a safer and cleaner environment
• repairing or replacing essential accessible technology
• computer upgrades needed for work, study, and communication
• replacing my broken Braille display

Why accessible technology matters #

My computer and Braille display are not luxuries. They’re part of how I read, write, communicate, manage appointments, study technology, prototype small tools with AI assistance, do part-time work, participate in advocacy, and keep as much independence as possible.

When those tools fail, my world gets much smaller.

Medical and living costs (GoFundMe) #

My GoFundMe helps with urgent needs such as basic living expenses, medical supplies, transportation, and accessible technology. You can support the fundraiser here:

Support my GoFundMe

If you can’t donate, sharing the fundraiser also helps.

Support my work #

If you’d like to support my writing, game development, and advocacy work beyond the fundraiser, you can:

• Ko-fi — One-time tips or monthly support. No platform fees on tips.
• GitHub Sponsors — Sponsor my open-source projects, including Everrealm and WordPredictor.

My writing and tools are free and always will be. Support is appreciated and never expected.

Follow updates #

I post longer reflections and updates on my blog:

Read my blog

Thank you for caring, praying, sharing, donating, and believing that disabled people deserve safety, dignity, stability, and the tools we need to keep going.

Sourcing Note: This article draws from my lived experience, current care situation, and a high school psychological/autism evaluation that documented the gap between my academic strengths and my adaptive support needs during the transition to adulthood.

The Grief of Being Misread #

There’s a kind of grief that doesn’t come from losing who you are. It comes from realizing that other people were never seeing all of who you were in the first place.

I’m grieving the realization that the “independent future” people imagined for me wasn’t based on my actual support needs. It was based on what they could see, what they wanted to believe, and what systems are willing to recognize.

That’s a hard sentence to write. It’s harder to live.

For much of my life, people saw certain things about me very clearly. They saw that I was blind. They saw that I was verbal. They saw that I could write, think, learn, use technology, advocate, and explain things. They saw intelligence. They saw faith. They saw opinions. They saw determination.

And because they saw those things, many people assumed they were seeing the whole picture.

They weren’t.

They didn’t see what it cost to appear functional. They didn’t see the executive dysfunction underneath the words. They didn’t see the sensory overload, the fatigue, the swallowing problems, the GI issues, the pain, the non-24 sleep rhythm, the medical instability, the autistic processing load, or the amount of support it takes for me to do basic daily life.

They didn’t see that being able to explain my needs isn’t the same thing as being able to meet them by myself.

They didn’t see that being able to use a computer isn’t the same thing as being safe, fed, clean, medicated, regulated, and supported.

They didn’t see that “independence” was often just another word for “alone with needs no one was helping me carry.”

The Future People Imagined #

I think a lot about the future people pictured for me.

Maybe I would have my own little place. Maybe I would cook simple meals. Maybe I would have some help come in. Maybe I would manage with enough technology, enough lists, enough services, enough determination.

It wasn’t a cruel dream. In many ways, it was a loving one.

People wanted me to have privacy, adulthood, dignity, choices, and a life that looked like mine. I wanted those things too. I still do.

But the imagined future had a problem: it depended on a version of me who had fewer support needs than I actually have.

It depended on:

• a body that could keep up
• a brain that could reliably initiate, sequence, organize, transition, and recover
• services that could actually show up
• housing that was safe, caregivers who were available, transportation that worked, medical care that understood complexity, and systems that didn’t require me to be less disabled in order to qualify for help

It depended on an “independent me” that everyone could picture more easily than the real me.

The real me can be smart and still need help showering regularly.

The real me can write essays and still struggle to feed myself safely.

The real me can advocate for disability justice and still need someone else to notice when the structure around me is collapsing.

The real me can understand complicated ideas and still need daily support with medications, meals, hygiene, sensory regulation, medical coordination, and basic stability.

Those things don’t contradict each other.

But many systems act like they do.

The Trap of Being Partially Visible #

One of the hardest parts of complex disability is being visible in the wrong ways and invisible in the wrong ways.

Blindness is visible enough that people notice it, but not always in a useful way. Sometimes it makes people flatten me into helplessness. Other times, if I have enough blindness skills, they assume blindness must be the main barrier and everything else is secondary.

Autism is often invisible until my needs become inconvenient.

Chronic illness is invisible until my body refuses to cooperate.

Executive dysfunction is invisible until something doesn’t get done.

Fatigue is invisible until I stop participating.

Sensory overload is invisible until I withdraw.

The need for care is invisible until the lack of care becomes a crisis.

And then, once the crisis is visible, people may suddenly act shocked that I can’t simply “be more independent.”

That’s the part that hurts.

Because I wasn’t suddenly disabled.

I wasn’t suddenly high support.

I wasn’t suddenly struggling.

The struggle was there. It was just being interpreted through the wrong story.

The Wrong Story #

The wrong story says that if someone is intelligent, articulate, and motivated, they should be able to become independent with enough training.

The wrong story says that if someone can do a task once, they can do it consistently.

The wrong story says that if someone can walk, they don’t need much physical support.

The wrong story says that if someone can speak, they can always communicate.

The wrong story says that if someone can use technology, they can manage life.

The wrong story says that if someone is young, they don’t belong in long-term care.

The wrong story says that needing that level of support means something has gone wrong with the person, instead of asking what has gone wrong with the support system.

I have lived inside that wrong story for a long time.

I have tried to make myself fit inside it.

I have tried to be the version of me who only needed a little help. I have tried to be the version of me who could make a plan, follow the plan, cook the food, manage the appointments, keep up with hygiene, handle the medical system, tolerate the environment, recover from stress, and still have energy left to build a future.

But wanting that version of me to exist didn’t make her real.

And grieving that is complicated.

Because it feels like grieving a possibility.

It feels like grieving the person other people thought I was going to become.

It feels like grieving the relief my family hoped would come.

It feels like grieving the idea that maybe, with enough effort, I could out-organize disability.

The Conversation That Should Have Happened #

One of the hardest parts of looking back is realizing that this wasn’t invisible.

There were records, evaluations, and adults who knew that I was academically capable but adaptively struggling.

My high school autism evaluation didn’t describe someone who simply needed encouragement to become independent. It described someone with strong verbal skills, strong memory, and real academic ability, but also major difficulty with daily living skills, socialization, coping, transitions, problem-solving, prioritizing tasks, emotional regulation, and a need for staff support to manage routines.

That should have changed the conversation. It didn’t predict every detail of my adult life, but it was more than enough to show that “just become independent” wasn’t a complete plan.

Someone should have sat my mom and me down and said:

Lanie is intelligent. Lanie has goals. Lanie can learn. But Lanie also has significant support needs, and those needs aren’t going to disappear just because she becomes an adult.

Someone should have talked with us about long-term care:

• not necessarily a nursing home
• not as a threat
• not as a failure
• but as planning

Someone should have explained home and community-based services, supported living, respite, attendant care, case management, transportation, medical coordination, caregiver backup plans, and what happens when the primary caregiver burns out.

Someone should have helped us understand that “transition to adulthood” couldn’t just mean college, work, and independence skills. For me, transition also needed to mean building a durable support system around my actual life.

Instead, the burden stayed mostly on us.

My mom kept trying to make the impossible work because there was no real system holding us. I kept trying to become the version of myself everyone hoped I could be because I didn’t understand yet that needing support wasn’t the same thing as failing.

And now, years later, I’m in a position where nursing home care is the safest option available to me right now. Not because a nursing home was the dream, and not because it was the most appropriate vision for my life, but because an unsafe home situation and a lack of adequate support left too few safe options.

That shouldn’t have happened.

No disabled person should have to enter a nursing home because the community support system failed.

No family should have to collapse before anyone admits the care needs were real.

No young disabled adult should have to lose choice, privacy, environment, and community because the only supports offered were either too little, too late, or not available where she actually lived.

The tragedy isn’t that I need care.

The tragedy is that care was treated like an emergency response instead of a lifelong access need.

Care Is Not Childhood #

Another painful part is how quickly people confuse needing care with being a child.

I’m a blind, autistic, chronically ill adult with complex support needs.

That sentence shouldn’t be hard for people to hold.

But it is.

Some people seem to have only two categories: independent adult or dependent child.

If I advocate for myself, I’m treated as competent enough to be left alone with impossible systems.

If I need daily care, I’m at risk of being talked down to, managed, dismissed, or treated like I’m no longer fully an adult.

Neither response is dignity.

I don’t stop being an adult because I need help.

I don’t stop having preferences because I need support.

I don’t stop having a mind because my body is unreliable.

I don’t stop needing privacy, agency, meaningful activity, spiritual life, friendship, technology, and purpose because I also need meals, medication, hygiene support, and a safe environment.

Long-term care shouldn’t mean being socially exiled from adulthood.

But too often, that’s how it feels.

Especially when you are younger than the people around you.

Especially when the activities, assumptions, schedules, and social environment weren’t built with someone like you in mind.

Especially when the safest available place is still not the right place.

What Systems Are Willing to Recognize #

Systems like clean categories.

They like checkboxes.

Can you walk?

Can you speak?

Can you eat by mouth?

Can you use the bathroom?

Can you make decisions?

Can you call someone if there’s an emergency?

These questions matter, but they aren’t enough.

They don’t capture whether eating by mouth is safe, exhausting, limited, or nutritionally adequate.

They don’t capture whether walking across a building causes pain, fatigue, sensory overload, or disorientation.

They don’t capture whether a person can make decisions but can’t reliably execute the steps without support.

They don’t capture whether a caregiver is collapsing.

They don’t capture whether the home environment is medically unsafe.

They don’t capture whether “community living” is only possible on paper because no caregivers are actually available in a rural area.

They don’t capture what happens when someone is too disabled for independence-based services but not neatly eligible for the kind of support that would actually fit.

That’s where people like me fall through.

Not because our needs are imaginary.

Because our needs are inconvenient to measure.

Because recognizing them would require systems to admit that independence isn’t always a realistic goal without major, ongoing support.

Because recognizing them would require someone to build real options between “you are fine” and “you disappear into a facility that wasn’t designed for your life.”

The Grief Underneath #

I’m grieving a lot right now. I’m grieving:

• the idea that I could someday live with just a little help
• the pressure my mom and I were under to make an impossible setup work
• the way love wasn’t enough to replace a care system
• every time I mistook survival for functioning
• the years when I thought I was failing at independence, when really I was being asked to perform a version of independence that didn’t match my body, brain, environment, or support needs
• the fact that safety may require sacrifices I never wanted
• that the safest option can still be lonely, overstimulating, infantilizing, or wrong in other ways
• the gap between what I need and what exists

And I’m grieving that so much of this had to become a crisis before it could be taken seriously.

I Was Not the Mistake #

The more I sit with this, the more I realize something important:

I wasn’t the mistake.

My needs weren’t the mistake.

The mistake was building expectations around a partial picture of me.

The mistake was assuming that intelligence cancels out support needs.

The mistake was treating independence as the only acceptable evidence of adulthood.

The mistake was making my family carry what should have been shared by a real support system.

The mistake was confusing visibility with understanding.

My nursing home placement shouldn’t have been the first time people treated my support needs as real.

I’m still me.

I’m still a person with thoughts, skills, faith, humor, preferences, interests, and goals.

I’m still someone who wants to learn, write, build, connect, worship, advocate, and contribute.

But I’m also someone who needs significant support.

Those truths belong together.

I don’t want a future based on denial anymore.

I want a future based on reality.

Not a hopeless reality. Not a flattened reality. Not a reality where needing care means giving up personhood.

A true reality.

One where the question isn’t:

How do we make her look independent enough?

But instead:

What support would let her be safe, respected, connected, and herself?

That’s the future I’m trying to imagine now.

Not the version of me everyone thought I was.

The version of me who’s actually here.

My home situation had become unsafe and unsustainable. My mom was exhausted. I was exhausted. We were trying to hold together a level of care that was too much for one overwhelmed family caregiver, especially in a rural area where outside help was difficult or impossible to get reliably.

At first, nursing home placement felt like an emergency option.

Not ideal. Not peaceful. Not the setting I would’ve imagined for myself.

But once I was here, something started becoming clearer:

Maybe I didn’t only need a temporary escape from a crisis. Maybe I actually need full-time, long-term care. That’s been a heavy realization. But it’s also been strangely clarifying.

The Crisis Didn’t Create the Need #

When you’re disabled, especially when your disabilities are complex and don’t always look the way people expect, there’s a lot of pressure to keep proving that you’re “capable.”

People see intelligence and assume independence. They see communication skills and assume daily functioning. They see youth and assume stamina. They see someone who can use a computer, advocate, write, study, or manage complicated information, and they assume that person should also be able to reliably manage meals, medication, hygiene, transportation, appointments, symptom flares, executive function, incontinence, sleep disruption, pain, fatigue, and crisis planning.

But those aren’t the same kind of capacity. Being able to think doesn’t mean my body can keep up. Being able to explain my needs doesn’t mean I can meet them by myself. Being an adult doesn’t mean I stop needing care.

For a long time, I think I internalized the idea that needing this much help meant something was wrong with me morally. Maybe I was lazy. Maybe I wasn’t trying hard enough. Maybe I should be able to do more because other people seemed convinced I could.

But the truth is that my needs were real before the crisis. The crisis just made them impossible to keep hiding.

What Full-Time Care Actually Means #

When people hear “long-term care,” they may picture only one kind of person or one kind of situation. They may imagine someone elderly, confused, or completely unable to communicate.

That’s not my story. I’m blind. I’m autistic. I have chronic illness, fatigue, pain, GI and swallowing issues, sleep disruption, and a body that doesn’t run on a predictable schedule. I need help with daily care in ways that are practical, physical, and ongoing.

Full-time care means medication support. It means meals I can actually access and tolerate. It means help with showers and hygiene. It means incontinence support without shame.

It means having someone available when my body crashes, when symptoms flare, or when basic tasks become too much.

And it means not depending on one family member to be caregiver, advocate, transportation coordinator, emotional support, crisis manager, and backup plan all at once.

That’s not childish.

That’s not failure. That’s support.

Relief Can Be Information #

One of the hardest parts of this has been admitting that some parts of being cared for feel like relief.

Not because this setting is perfect. It’s not.

A nursing home may not be the right long-term setting for me. I’m younger than many residents. I’m blind. I’m autistic. I need access to technology, communication, privacy, appropriate food and nutrition, and some level of self-direction. I need care that understands disability without treating me like a child.

Those things matter. But even with the imperfections, I’ve had to notice something important:

When meals, meds, showers, and daily care aren’t entirely on me and my mom, my nervous system understands the difference. My body understands the difference.

The relief itself is information. It tells me that the old situation wasn’t just difficult. It was beyond what we could safely sustain. It tells me that I wasn’t weak for struggling. It tells me that my mom wasn’t failing because she couldn’t keep doing everything. It tells me that the level of support I need is bigger than what our home situation could provide.

The Setting and the Care Level Aren’t the Same Thing #

This is the distinction I keep coming back to:

A nursing home may not be the right setting. But full-time long-term care may still be the right level of support. Those aren’t the same question.

The wrong setting doesn’t mean the care need is wrong. A facility can be safer than home in some ways and still not be fully appropriate. It can provide structure and support while also revealing gaps. It can be a bridge, not a destination.

That’s where I am right now. I’m trying to be honest about both sides.

I needed to get out. I needed more care. I still need a setting that fits me better.

I need support that recognizes me as an adult disabled person with my own mind, faith, preferences, skills, and goals. I don’t need to be warehoused. I don’t need to be infantilized. I don’t need people assuming that because I need help with daily living, I no longer need autonomy. I need care that makes life possible.

Being Cared For Doesn’t Make Me Less Adult #

One of the painful things about being blind, autistic, young, and in need of long-term care is the way people can start treating you like a child.

Sometimes it’s subtle. Sometimes it’s really not.

But needing help with basic tasks doesn’t erase adulthood. It doesn’t erase intelligence. It doesn’t erase spiritual maturity, personality, preferences, boundaries, or calling.

I’m still me. I’m still a student. I’m still a writer. I’m still a Christian. I’m still an advocate. I’m still someone who thinks deeply, loves deeply, learns constantly, and wants to build something meaningful with my life.

I also need help.

Those truths can coexist.

Actually, they have to coexist, because pretending otherwise nearly broke us.

I’m Still Figuring This Out #

I don’t have a neat conclusion yet. I’m still in the middle of this. I’m still learning what options exist, what Medicaid will cover, what settings might be possible, and what kind of long-term care could actually support me without stripping away my personhood.

I’m still grieving parts of this. I’m grieving the idea that if I just tried hard enough, organized better, found the right system, or pushed through one more flare, I could make an under-supported life work. I’m grieving the pressure my mom and I were both under. I’m grieving how long it took for the need to be taken seriously.

But I’m also trying to tell the truth. The truth is that I need full-time care. The truth is that needing full-time care doesn’t make me less worthy of dignity, choice, privacy, respect, or community. The truth is that long-term care shouldn’t only be about keeping someone alive. It should be about making life livable.

The crisis got me here.

But the care need was already real.

And maybe naming that is the first step toward finding a setting where I can be safe, supported, and still fully myself.

This page is for blind students, parents, and caregivers who suspect blindness may not explain everything. A blind student can be intelligent, verbal, academically successful, and still need significant support with daily living, medical care, sensory regulation, executive function, communication, safety, or transition to adulthood. Struggling in these areas does not mean the student is lazy, noncompliant, or failing at blindness. It may mean blindness is only one part of the picture.

This page is not medical, legal, or educational advice, but it can help families prepare questions for qualified professionals and support teams.

Red flags blindness alone may not explain #

Blindness can affect learning, access, mobility, and daily life. But if a blind student is struggling in ways that seem bigger, broader, or more complicated than blindness alone, it may be time to ask whether other disabilities, medical conditions, or support needs are being missed.

Red flags may include:

• Extreme fatigue, pain, shutdown, or collapse after ordinary demands.
• Adaptive skills far below academic ability.
• Major difficulty with planning, organizing, prioritizing, task initiation, or problem-solving.
• Difficulty with memory, attention, processing speed, or following multi-step directions.
• Frequent meltdowns, shutdowns, panic, or emotional dysregulation.
• Sensory overload or strong reactions to sound, touch, movement, food textures, smells, crowds, or unexpected change.
• Difficulty with transitions, schedule changes, new environments, or increased expectations.
• Difficulty with self-care, hygiene, meals, hydration, medication routines, or daily living skills.
• Coordination, balance, motor planning, stamina, or safety-awareness concerns.
• Chronic pain, fatigue, sleep problems, swallowing/GI issues, neurological symptoms, endocrine concerns, or other health conditions affecting daily functioning.
• Social communication, peer interaction, or self-advocacy difficulties that go beyond access barriers.
• Independence training causing deterioration, regression, distress, or loss of functioning instead of growth.
• A student being described as “lazy,” “noncompliant,” “attention-seeking,” “too anxious,” or “not trying hard enough” when their functioning gets worse under demand.

Questions to ask schools and evaluators #

If a blind student is struggling in ways blindness alone does not explain, families should not be left to guess what to ask for. These questions can help guide conversations with schools, evaluators, doctors, therapists, and service providers.

Evaluation and diagnosis #

• Has the student had a full neuropsychological evaluation, not only blindness-related assessment?
• Has adaptive functioning been assessed, including daily living skills, communication, socialization, self-care, and safety?
• Has autism, ADHD, intellectual or developmental disability, trauma, anxiety, depression, or other mental health needs been considered?
• Are medical causes being evaluated when symptoms suggest them, including neurological, endocrine, sleep, pain, fatigue, swallowing, GI, or mobility concerns?
• Are sensory processing needs being assessed, including sound, touch, movement, food texture, smell, light, transitions, and crowded environments?
• Are professionals considering how multiple disabilities interact, rather than treating each need separately?

Capacity and support #

• Are expectations based on the student’s actual capacity, or only on age, grade level, intelligence, or blindness skills?
• What does the student need on bad days, during illness, during sensory overload, or after repeated demands?
• Are current goals helping the student grow, or causing shutdown, collapse, pain, distress, regression, or loss of functioning?
• Are supports being reduced because the student is ready, or because the program expects more independence?
• What supports are needed for meals, hydration, medication routines, hygiene, sleep, transportation, communication, technology, and safety?
• What parts of the day require adult support, prompting, supervision, or backup?

Transition planning #

• What adult services might the student qualify for before leaving school?
• Who is helping the family apply for services, not just telling them services exist?
• What home and community supports may be needed after graduation or transition?
• What is the plan for vocational rehabilitation, personal care services, Medicaid waiver programs, transportation, benefits counseling, supported living, respite, or case management?
• What happens if college, work, or independent living is not immediately realistic or safe?
• Is the transition plan built around the student’s whole life, or only school, work, and blindness skills?

Communication and self-advocacy #

• How does the student communicate distress, overload, pain, confusion, or shutdown?
• Are adults listening when the student says something is too much?
• Does the student have safe ways to ask for help without being punished, shamed, or labeled noncompliant?
• Is self-advocacy being taught in a way the student can actually use, or is the student expected to advocate independently before they have the support to do so?

Accountability #

• Who is responsible for coordinating between school, family, doctors, therapists, and community providers?
• How will the team monitor whether the plan is working?
• What will change if the student’s functioning gets worse?
• What data will be tracked besides grades and completed tasks?
• Who will make sure support does not disappear when the student struggles?

What better support can look like #

Good support should be individualized, realistic, and stable. It should not disappear when a student struggles.

It should include:

• Interdependence: building skills while recognizing that some people need ongoing support, shared responsibility, and care infrastructure.
• Trauma-informed planning: understanding that stress, punishment, medical trauma, repeated failure, and institutional harm can affect learning and functioning.
• Medical follow-up: coordinating with healthcare providers when symptoms may involve pain, fatigue, neurological issues, endocrine issues, sleep, swallowing, GI problems, mobility, or other health needs.
• Sensory accommodations: reducing avoidable overload from sound, light, touch, movement, food textures, smells, transitions, and crowded environments.
• Realistic transition goals: setting goals based on capacity, health, adaptive functioning, and support needs, not only age, grade level, intelligence, or blindness skills.
• Adult services planning: helping families identify and apply for services before a crisis.
• Family education and respite: supporting caregivers instead of assuming families can provide unlimited care.
• Reliable support: keeping help in place on bad days, during illness, or when the student is overwhelmed, exhausted, or unable to perform independence.
• Person-centered planning: respecting the student’s communication, preferences, autonomy, dignity, identity, and actual lived limits.

Resources / Next Steps #

If you are a blind student, parent, caregiver, or advocate and you suspect blindness is not the whole story, you do not have to solve everything at once. Start by naming the concern clearly and asking for help that considers the whole person.

1. Ask for broader evaluation #

Ask whether the student needs more than blindness-related assessment. Depending on the concerns, this may include neuropsychological evaluation, autism evaluation, adaptive functioning assessment, occupational therapy, speech/language or swallowing evaluation, sleep evaluation, medical follow-up or evaluation, or trauma-informed mental health support.

2. Bring capacity into every planning conversation #

Ask whether goals are based on the student’s real capacity, including bad days, illness, fatigue, pain, sensory overload, executive function, and medical needs. If a plan causes shutdown, collapse, regression, or loss of functioning, the plan needs to change.

3. Ask about services before crisis #

Families should not have to discover support systems only after everything falls apart. Ask schools, caseworkers, doctors, therapists, and disability agencies what services may be available before graduation or transition, including adult services, home and community supports, vocational rehabilitation, attendant care, respite, transportation, benefits counseling, or supported living.

4. Document patterns #

Keep notes about what happens when demands increase or supports decrease. Track fatigue, pain, shutdowns, meltdowns, missed meals, medical symptoms, sensory overload, and loss of functioning. Documentation can help show that a student is not “refusing,” “being difficult,” or “failing to cope.” They may be exceeding capacity.

5. Plan for interdependence #

The goal should not be independence at any cost. A good plan should help the student build skills while also recognizing that some people need long-term support, shared responsibility, accessible systems, and care infrastructure.

Interdependence is not failure. Support is not failure. Safety is not failure.

My Story #

I wrote more about why this matters to me here: Blind, Multiply Disabled, and Pushed Beyond Capacity.

This is not a “Pi bad” post.

It’s a post about accessibility tradeoffs.

I wanted the Pi setup to work. On paper, it looked ideal: cheap, low power, always-on, and very “Linux.”

In practice, it kept failing one question:

Can I still use this when I’m sick, tired, blind, overwhelmed, and low on energy?

For me, the answer kept being no.

So I’m moving this part of my Linux workflow to openSUSE on WSL.

What I Wanted the Pi to Be #

I wanted a little Linux box for:

• MiniFlux and feed tooling
• small dev services
• always-on utility tasks
• eventual agent experiments
• coding and static site work: my own little dev box

That’s a normal Pi use case.

The issue is that “normal” advice often treats extra steps as tiny. For me, many of those steps are real access costs.

What Actually Happened #

The biggest problem was not one giant failure. It was repeated friction that kept stacking up.

Headless was fragile for my access needs #

I’m blind. “Just glance at the screen” is not part of my troubleshooting toolkit.

When SSH failed, the Pi effectively went silent for me. No SSH, no speech output, no reliable way to confirm state.

Even plugging in a keyboard did not solve that. Blind typing into an unknown login state is guesswork, not access.

Even the Raspberry Pi 500’s built-in keyboard didn’t solve this. I bought the 500 partly because it was new and partly because the built-in keyboard sounded like it might make direct access easier. In practice, I didn’t realize how tiny that keyboard would feel. I had to count keys to know where I was, so it never became a usable fallback. If I had to physically use the Pi, I would want a wireless keyboard, and speech output would still be required.

This is the line I keep coming back to:

Headless is only accessible when the access path survives failure.

Network assumptions were not minor #

Many recovery suggestions assume Ethernet is easy. In real life, “just plug in Ethernet” can require the right cable, the right physical setup, and enough energy at the right time.

I also tried mobile tethering ideas, but those can still depend on trust prompts and setup steps that fail exactly when you need a quick recovery path.

So SSH and network access became a single point of failure.

ARM increased unpredictability #

I kept hitting package issues on ARM: missing packages, older versions, weird differences, and more “why is this different here?” than I could sustain.

ARM is useful. I’m not anti-ARM.

But for me, it made daily setup and recovery less predictable.

Predictability is an accessibility feature.

Physical recovery loops were expensive #

When things broke badly, recovery could turn into a physical loop:

• remove storage
• connect it to another machine
• mount and edit
• unmount and reinsert
• reboot and hope

That’s a lot when you’re blind, chronically ill, and fatigued.

Sometimes the Pi needed a power cycle. If I was away, too sick, or in the hospital, work on that device was basically trapped.

In the worst moments, recovery depended on someone else being home and available.

That’s not reliable infrastructure for my life.

There’s also the hospitalization problem.

With my health, rehospitalization isn’t theoretical. During my last hospital stay, I had my PC with me, but not the Pi. Just because the Pi was running at home didn’t mean it was reachable or useful. If coding work or service setup lives only on a device across the house or across town, it can get trapped the moment I’m away from it.

It gets worse because the Pi sometimes becomes unresponsive and needs to be physically unplugged and plugged back in. Asking my mom to power-cycle it can work if she’s home, awake, able, and available. But it turns my dev setup into another chore chain for her: I notice something is broken, ask her to stop what she’s doing, wait for her to physically handle the device, and hope it comes back.

That’s not independence. It’s another dependency.

My coding environment needs to follow me. At minimum, the important work has to live somewhere I can reach from the computer I actually have with me.

Why WSL Works Better for Me #

WSL is not “pure Linux,” and I’m fine with that.

That tradeoff matters less to me than having a Linux environment I can actually reach and recover.

It lives where I already work:

• same keyboard
• same NVDA/screen reader workflow
• same desktop, browser, and AI tools
• same files and copy/paste
• same recovery path

If WSL gets weird, I can usually recover from the same environment with a shutdown/restart workflow and keep moving.

No separate device. No separate network path. No separate physical intervention for basic access.

That matters because Windows and NVDA are not separate from the setup. They are part of what makes the setup usable.

Why openSUSE on WSL Surprised Me #

I didn’t assume “Linux is Linux.”

I’d already learned that distro choice, package manager choice, and maintenance culture matter.

I tried Ubuntu, Debian, and Raspberry Pi OS. They were stable in the usual sense, but older packages became a recurring problem for accessibility-adjacent tools, dev tools, and newer workflows. I can use apt, but it has never felt very intuitive.

Then I tried Arch. At first, I liked it. It was current and flexible, and it felt empowering.

But on a Raspberry Pi, that empowerment started feeling fragile. Arch Linux ARM gave me rolling-release sharpness plus extra ARM and Pi friction: boot quirks, SSH dependence, SD cards, and headless recovery loops. When it worked, it felt elegant. When it failed, it became a silent box I could not reliably reach or recover.

That’s what made me try openSUSE.

On paper, Tumbleweed looked like the balance I wanted: current packages with more structure and guardrails than Arch. I wanted a distro that still respected power users but gave me more cognitive help.

I first tried openSUSE on the Pi, and that attempt didn’t make it past first boot in a usable way. On a headless Pi with no speech output, a first-boot failure isn’t minor. It’s the same trap again: no reliable SSH, no accessible feedback, no clear state, and no low-energy recovery path.

Then I tried openSUSE in WSL.

That was the version that finally clicked.

The same distro that felt painful on a silent, separate Pi became usable and even pleasant inside my existing Windows workflow. I had NVDA, my keyboard, my browser, my notes, ChatGPT, VS Code, copy/paste, and my usual recovery path.

I was no longer rescuing a silent box across the network. I was working in a system I could actually reach.

What helped inside openSUSE itself:

• zypper output is easier to follow with a screen reader
• zypper short forms like zypper in and zypper se are easy to remember
• package recommendations reduce follow-up setup work
• command-not-found suggestions help on low-cognitive-energy days
• package behavior feels less punishing when things are already current

Friendly defaults are not hand-holding. They are reduced cognitive load.

Quick Checklist: Pi vs WSL for Access Needs #

If you’re deciding between a separate Linux box and WSL, ask:

• If remote access fails, do I still have an accessible fallback?
• Can I recover this setup without visual checks?
• Does this setup depend on physical intervention I may not be able to do?
• Are package and tooling differences predictable enough for my energy level?
• Can I troubleshoot from the same device where I already use my accessibility tools?
• On my worst health day, is this still usable?

If most answers are no, the setup may be technically impressive but practically inaccessible.

The Accessibility Lesson #

For disabled users, reliability is not boring.

Predictability is not optional.

A tool that technically works but repeatedly needs physical access, obscure recovery steps, or network luck can still be inaccessible in practice.

The best tool is not the one that looks most elegant to the average Linux hobbyist.

It’s the one I can still use when I’m sick, tired, blind, overwhelmed, and alone in bed.

Final Stance #

Raspberry Pi is still a great platform.

It’s just not the right accessibility tradeoff for me right now.

For now, openSUSE on WSL is the Linux setup that fits my body, my brain, and my access needs.

For me, simpler doesn’t mean fewer machines in theory. It means fewer failure paths in practice.

One accessible workstation. One keyboard. One screen reader. One familiar path back when things break.

I wanted one number that worked reliably from my Windows desktop, with my iPhone nearby, without constant device switching. I wanted something boring and dependable.

What I got instead was a long reminder that “technically supported” and “actually usable” are not the same thing.

What Desktop-First Means for Me #

“Desktop-first” is not just a preference.

For me, it’s access.

I’m blind, and I use a screen reader. I also deal with coordination and spatial-processing issues, chronic fatigue, and cognitive disabilities. Holding and using a phone for long stretches can be physically tiring. Touchscreen navigation can feel slower and more mentally expensive. Small mobile interfaces usually require more precision and more context-switching than I can sustain.

My desktop is where my accessibility tools, keyboard workflow, notes, browser tabs, and AI support all live together. If a communication system keeps pushing me back to my phone, it’s not just annoying. It raises my cognitive load and makes me more likely to miss something important.

This gets close to what I mean in Intent-First Computing: the interface should adapt to the user’s intent and constraints, not force extra friction at exactly the wrong moment.

Why I Ended Up Needing a Second Number on Windows + iPhone #

I tried hard to avoid this.

A second number isn’t free in an executive-function sense. It means another contact point to remember, another thing to explain to people, and another piece of my communication life to manage.

In an ideal setup, I’d use my existing iPhone number from Windows and be done with it. But Windows and iOS still don’t work together well enough for my needs.

That forced a question I didn’t want to ask:

Can I keep fighting ecosystem gaps, or do I need a second number that is built around reliable desktop access?

Unfortunately, the answer was the second one.

I didn’t choose another number because I wanted more complexity. I chose it because the “simpler” path wasn’t dependable enough in daily use.

What I Needed From a Service #

This is not a universal ranking of VoIP services. It’s a workflow-based decision from my perspective as a blind, multiply disabled, desktop-first user who needs communication to be reliable with minimal friction.

Before comparing tools, these were my baseline requirements:

• Reliable desktop texting
• Web access when possible, not only native apps
• Screen-reader and keyboard usability
• Message history that stays available across restarts
• Easy copying and sharing of message content
• Low setup and maintenance overhead
• Predictable monthly cost

That copyability point matters a lot for me. If I can’t easily move message content into notes, documentation, or AI assistance, the tool breaks part of my workflow. I talk more about AI as workflow support in AI as a Second Brain.

What I Tried #

Microsoft Phone Link #

Phone Link was the closest thing to “use my existing number on desktop,” which is exactly what I wanted.

In practice, it was too clunky and too fragile for iPhone use.

Main issues for me:

• Native app only, not a flexible web workflow
• Limited keyboard efficiency, too much tabbing and arrowing
• No simple way to copy an entire thread
• Message history did not reliably persist across restarts
• Older messages or attachments often sent me back to the phone

For my workflow, that last point is the deal breaker.

Google Messages for Web #

This is solid for Android users who want desktop texting.

But it didn’t solve my problem because I use iPhone. It also doesn’t replace full calling on its own, though messaging was my biggest priority anyway.

JMP.chat #

I like the idea behind JMP.chat, and I can see why technical users love it.

But for me, it wasn’t reliable enough for critical communication.

Issues I ran into:

• Delayed texts
• Calls not ringing for long enough for me to answer on iPhone
• Ongoing format friction with numbers and the @cheogram.com suffix
• Encryption complexity (OMEMO in XMPP contexts vs SMS reality)
• Too much cognitive overhead for a tool that needs to be boring

VoIP.ms #

VoIP.ms looked interesting and powerful.

It also felt like more infrastructure than I wanted to manage for this use case. For someone who wants deep SIP control, it might be great. For my current capacity and needs, it was too complex.

Other Business Phone Platforms #

I considered options like Teams Phone and RingCentral too.

Most were either too expensive, wrong for my ecosystem, or less accessible than I needed. Others felt shaped for organizational workflows, not one disabled person trying to communicate reliably from a desktop.

What Worked: Google Voice Starter #

Google Voice ended up being the best fit for my actual life, not the most “advanced” option on paper.

What made it work for me:

• Reliable on both desktop and phone
• Good enough accessibility for day-to-day use
• Clear desktop workflow for texts, calls, and voicemail
• Less friction switching between communication and everything else I do
• Predictable cost through Google Voice Starter in my Google Workspace setup

The main downside is that it’s still another number, and some services may not treat VoIP numbers the same way they treat mobile carrier numbers. So I treat it as my reliable communication number, not a perfect replacement for every phone-number use case.

If you need one number that handles everything, this setup probably won’t be the right fit.

I still think of my carrier number as the number tied to my physical phone, while Google Voice is the number that better fits my desktop communication workflow.

The consumer version gave me number verification trouble with my existing number. The business path avoided that specific roadblock.

Most importantly, this setup reduced the chance that I would miss messages because one app or one ecosystem handshake failed at the wrong time.

The Core Lesson #

The “best” VoIP option for a disabled desktop-first user is usually not the one with the most features.

It’s the one that quietly fits your access needs and stops demanding extra energy all day.

For me, that meant accepting a second number so my communication system would finally line up with how I actually work.

That’s not elegant. But it’s functional. And right now, functional wins.

I was the kid who read early, read constantly, and used words in ways adults noticed. I was trying to talk before I was six months old. My first word was really a first sentence: “Hi there mama.” I read everything I could get my hands on, including a medical dictionary when I was six.

From the outside, that looked like language strength. Maybe it was. I also suspect I may have been hyperlexic as a small child, though I can’t prove that now. What I can say is that early reading made adults notice my language before they noticed my friction with language. Reading words, recognizing patterns, and collecting vocabulary are not the same as being able to explain yourself easily, answer quickly, or turn internal experience into speech on demand.

But being good with words is not the same thing as words being easy.

That distinction has shaped a lot of my life.

The Finished Version Is What People See #

What people usually see is the end result.

They see the polished email. The thoughtful explanation. The essay that sounds clear by the time I’m done with it. The fact that I can sometimes use very precise language. The fact that I learned to read early.

Once people know you can produce polished language, they often start expecting every attempt to be polished on the first try.

What they usually don’t see is how much it costs to get there.

• They don’t see me sitting with a blank document and not knowing how to start, even when I know exactly what I want the piece to be about.
• They don’t see me going over what to say in my head for hours before a conversation.
• They don’t see me knowing the shape of what I mean, but not being able to get the wording to line up.
• They don’t see me getting stuck on one sentence because I know it isn’t landing right, but I can’t yet find the version that does.
• They don’t see how much time I spend trying to make language feel stable enough to send.

People mistook the quality of my finished language for the ease of producing it.

Being “Highly Verbal” Hid the Access Need #

Once people decide you’re “highly verbal” or “good at writing,” they often stop looking for communication difficulty.

The label sounds positive, but it can work like a trap.

If you produce strong writing, people may assume writing is comfortable for you.

If you have a large vocabulary, people may assume word finding is easy.

If you can explain something clearly after enough time, people may assume you can also explain it clearly on demand.

If you spoke early or read early, people may assume language has always been a low-effort system for you.

That wasn’t how it worked for me.

I’ve spent a lot of my life needing extra time to find words, extra time to start, extra time to organize what I mean, and extra time to translate internal experience into language someone else can follow.

Pressure makes that harder, not easier.

Speech Is Not Always Faster #

Spoken language can be even harder because it happens in real time.

When I am writing, I can pause. I can delete a sentence. I can move a paragraph. I can stare at the same line until the words finally settle into place.

Speech does not give me that same room.

In conversation, people often expect language to appear quickly. They expect a pause to mean I am done, confused, evasive, or not trying hard enough. But sometimes the thought is there and the words are still loading. Sometimes I am searching for the right word, the right order, or the safest way to say something without being misunderstood.

Being rushed does not pull the words out faster. It adds pressure to a system that is already straining.

That is why “spit it out” was never a shortcut. It was interference.

School Saw Skill and Assigned the Wrong Task #

Because I seemed good at writing, I kept getting pushed toward forms of writing I hated.

One of the worst examples was being steered into creative writing workshops.

This made sense to other people. It made no sense to me.

People heard “good with words” and assumed that meant fiction would come naturally, or at least that it should be a good fit.

It wasn’t.

Writing fiction is horrible for me.

Reflective or analytical writing is still hard, but it lets me work from something real: an experience, a system I’m trying to understand, a pattern I’ve noticed, or a problem that needs language around it. I’m not inventing from empty space. I’m translating something that already exists.

Fiction asks for a different kind of generation. It asks for invention, scene-building, character handling, pacing, and a kind of open-ended shaping that feels awful in my brain.

So I wound up in situations where other people thought they were encouraging a strength, while I was stuck inside a task that felt confusing, forced, and miserable.

I was also asked more than once why I hated writing so much.

The answer was never “because I have nothing to say.”

The answer was closer to this: because producing language can be slow, effortful, and physically and cognitively sticky, and because people kept confusing visible output with invisible ease.

The Problem Isn’t Lack of Thought #

This is part of what’s so hard to explain.

Often the problem is not that I don’t know what I think.

The problem is that the thought exists in a form that is not yet language. Or not yet organized language. Or not yet shareable language.

• Sometimes I know the concept but not the word.
• Sometimes I know the point but not the opening.
• Sometimes I can feel the structure of a piece but can’t find the sentence that gets me into it.
• Sometimes I can answer, but not at speaking speed.
• Sometimes I can write it, but only if I get to circle around it first.

That doesn’t mean the thought is missing.

It means the translation step is expensive.

Why This Matters as an Accessibility Issue #

Other disabled people may have different relationships with speech, writing, AAC, or AI. This is mine.

I think a lot of people still treat communication difficulty as something that only counts if it is obvious from the outside.

If someone is nonspeaking, visibly struggles to form sentences, uses AAC, or has a very clear expressive language delay, many people will at least recognize that communication access might matter.

If someone sounds articulate, writes well, or has an advanced vocabulary, that recognition often disappears.

But fluency and access are not the same thing.

Someone can be articulate and still need:

• processing time
• questions in writing
• room to revise before sending
• typed communication instead of spoken communication
• patience during word-finding delays
• low-pressure conversation
• support getting started
• help structuring a thought that already exists

Those are communication access needs.

They don’t stop being access needs just because the final output sounds polished.

Why AI Helps Me #

This is also part of why AI has been so useful for me.

It helps because it reduces the cost of the translation step.

• Sometimes I need a starting sentence.
• Sometimes I need help turning a rough verbal shape into a usable structure.
• Sometimes I need to say, “This is what I’m trying to get at,” and have the system offer a few ways into it.
• Sometimes I need word-finding support without the social pressure of another person waiting on me in real time.
• Sometimes I need a private place to be unclear before I can become clear.
• Sometimes I need to externalize half-formed thoughts and then work with them once they’re visible.

That connects to the same idea I wrote about in Intent-First Computing: I want tools that can turn messy intent into concrete action without making me memorize every spell. That’s not intellectual laziness. It’s access.

AI helps as a drafting partner, a structure generator, a rephrasing tool, and a low-pressure language interface.

For me, that matters because getting from “I know the shape of this” to “here are the words” is often the hardest part.

Human support matters too, but people are not always available, patient, or safe. Sometimes another person waiting for an answer adds exactly the pressure that makes language harder. AI gives me a buffer where I can struggle with words before the result has to be social.

What I Wish People Understood #

I wish more people understood that strong language output can hide a huge amount of labor.

• I wish teachers understood this.
• I wish professionals understood this.
• I wish the people who rushed me understood this.
• I wish more accessibility conversations understood this.

Looking verbally skilled is not the same as having frictionless access to language.

Reading early did not make word retrieval effortless.

Writing well did not make writing easy.

Being able to explain something eventually did not mean I could explain it on demand.

They saw the words after I had already fought for them.

What Helps #

• What helps is not being rushed.
• What helps is being allowed to answer in writing when speech is too much.
• What helps is getting questions ahead of time when possible.
• What helps is permission to pause without someone filling the silence with impatience.
• What helps is being able to draft, revise, and clarify before my words are treated as final.
• What helps is access to tools, including AI, that let me turn rough internal language into something I can actually use.

These supports don’t make my communication less real.

They make communication possible.

Highly Verbal Still Needs Access #

For a long time, other people treated language as one of my obvious strengths. In some ways, it is. But that framing left out the part that mattered most: how much work it can take to get language into a form other people can actually receive.

Being highly verbal did not cancel out communication difficulty. In some ways, it helped hide it.

That hiding has a cost.

For me, accessibility means finding tools, supports, and conditions that lower that cost enough for the words to get through without turning every conversation into a slog.

I agreed, but for a different reason.

For me, the phone is often harder to use. Small screens, touch gestures, mobile-first layouts, and apps designed around visual scanning can all become physically and cognitively exhausting. A lot of the time, I wish I could just use my computer.

That probably sounds strange in a world where everything keeps moving toward mobile. But for me, desktop-first access isn’t nostalgia. It’s function.

Not old-school vs modern #

My access needs aren’t simply old-school or modern. They’re both.

I benefit enormously from modern technology. I rely on screen readers, accessible desktop apps, browser accessibility APIs, cloud services, AI chat, touch accommodations, assistive touch, and tools like VS Code and Windows Terminal.

At the same time, a lot of modern design trends make things harder for me: mobile-first interfaces, touch-first assumptions, video-first learning, visual dashboards, spatial interfaces, audio-first accessibility, and apps that hide information behind “simple” UI.

What I need isn’t old technology.

What I need is technology that is:

• desktop-first
• keyboard-first
• text-first
• screen-reader-friendly
• transparent
• searchable
• reviewable
• forgiving when my brain cannot remember the exact spell

What still works best for me #

Some of what works best for me looks almost old-fashioned:

• full keyboard control
• real windows
• desktop apps
• command lines
• text logs
• lists and menus
• searchable output
• screen-reader review
• interfaces that let me move at my own pace

That’s one reason I like MUDs, terminal tools, Betterbird, VS Code, and other keyboard-driven software. They give me information I can read, review, search, and copy.

But this isn’t me asking to go backward.

Without modern technology, I probably wouldn’t be very functional at all.

Text-first isn’t terminal-only #

I often say I need text-first tools, but that doesn’t mean the terminal is always the easiest interface for me.

Terminals are powerful because they expose information. They give me logs, errors, filenames, command output, and state I can copy, search, and review. When something goes wrong, a terminal often tells me more than a modern app does. That kind of transparency is a huge accessibility benefit.

But terminals also make me remember exact syntax at exactly the moment I need it. I have to remember command names, subcommands, flags, argument order, service names, config keys, and little details like whether a systemd service needs --user.

The concept may make sense, but the recall burden is still high.

A well-designed desktop app can sometimes be easier because it gives me structure: menus, keyboard shortcuts, command palettes, autocomplete, labeled controls, and saved settings. Those all reduce the amount I have to hold in working memory.

So my ideal interface isn’t “everything should be a terminal.”

It’s this:

Terminal-like transparency with desktop-like discoverability.

I need access to real information, and I need actions to be findable when my brain can’t remember the exact spell.

Low baseline energy changes everything #

Because of my conditions, my energy is usually low before I start anything.

There’s a constant background level of exhaustion I’m already working around. So when an interface makes me remember exact syntax, search through settings, switch between apps, recover from errors, or translate a vague need into a clean technical question, that isn’t a small thing.

It can be the difference between doing the task and not doing it at all.

Friction is not neutral when my baseline is already low energy.

AI as the bridge beside the terminal #

Right now, a lot of my terminal work already involves AI.

I often keep an AI chat open beside the terminal so I can ask questions when I get confused, frustrated, or stuck. I might understand the general goal, then get blocked by one small detail: a flag, argument order, service scope, or error I can’t parse quickly.

Sometimes the question isn’t clean. It’s just:

“Ugh, why isn’t this working?”

with pasted output and a little context.

That matters. When I’m stuck, I don’t always have the energy to turn the problem into a polished technical question, and even if I have the energy, I often can’t find the words. I just need help making sense of the mess.

AI can look at the output, infer what I was probably trying to do, ask for missing details, and help me find the next step. In those moments, AI becomes an accessibility bridge.

But today it’s often a separate layer. I’m still switching between tools, copying output, asking follow-ups, checking trust, then going back to the terminal.

Helpful, yes. Also extra cognitive work.

Why AI-integrated terminals matter #

This is why AI-integrated terminals interest me.

A terminal like Warp is appealing in theory because it points toward the kind of workflow I want: commands, logs, and real output in one place, with natural-language help when I get stuck.

But if the terminal itself isn’t accessible with a screen reader, the AI layer doesn’t solve the problem.

An AI terminal only helps me if both halves are accessible: the terminal and the AI layer.

This is also why Microsoft’s Intelligent Terminal caught my attention.

I don’t assume Microsoft gets accessibility right automatically. But compared with a lot of companies making shiny AI dev tools, Microsoft has a better track record in tools I actually use: Windows, Office, VS Code, and Windows Terminal. Those aren’t perfect, but they’re broadly usable with screen readers and keyboard workflows in a way many newer apps are not.

In early testing, Intelligent Terminal seems promising for me. I don’t know yet whether it will fit my workflow long-term, but the early accessibility signs matter. The key word is still if.

Natural language is not the same as voice #

I also want to be explicit about this:

Natural language does not have to mean voice.

Many people want an AI computer they can talk to out loud. I understand that.

For me, speech is complicated. I pause. I lose words. I trail off. I may know the shape of what I mean before I can say it cleanly.

Typing gives me more control. I can be messy and still edit. I can write half a thought, backspace, paste an error, add context, and keep going.

Maybe one day voice AI will handle pauses, word-finding issues, restarts, and unfinished thoughts well enough that I trust it more.

For now, the dream is not only a computer I can speak to.

It’s a computer I can type messy human intent into, and have it help me turn that intent into action.

What I mean by intent-first computing #

I’m drawn to the idea of an AI operating system, but not in the “assistant sprinkled on top” sense.

I mean a computer where I can type what I need in ordinary language, even when the thought is half-formed, and the system can help me turn that into concrete steps.

Sometimes I don’t have the energy to remember the exact command, find the right setting, navigate the right app, or explain the problem neatly. I may only have something like:

• Ugh, why is this broken
• I need this service running again
• Find the form I was working on and help me finish it
• Clean up these downloads, but ask before deleting anything important

For me, that kind of interface wouldn’t be laziness.

It would be access.

The ideal system would work from intent instead of syntax. It would gather context, suggest next steps, run safe actions, and ask before risky ones.

It would also be accessible by design, not as a patch later.

I’d need:

• keyboard control
• screen-reader and Braille support
• typed natural language input
• optional voice input that can handle pauses and word-finding issues
• text output
• reviewable logs
• clear confirmations
• predictable focus
• settings for AI autonomy levels

I need to know what changed, what failed, and what the system plans to try next.

The dream is not a black box that takes over my computer.

The dream is a computer that can meet me where my brain actually is, translate messy intent into concrete steps, and still let me inspect, correct, and trust what’s happening.

Gaming shows the same pattern #

I’ve written before about what gaming is like for me as a blind, neurodivergent, chronically ill woman. Games are one of the places where this access pattern becomes especially obvious.

A lot of blind-accessible gaming focuses on audio cues, soundpacks, spatial audio, or mods for visual games. Those help many blind gamers, and I’m glad they exist.

But they often aren’t good access for me.

I’m blind, autistic, chronically ill, often exhausted, and have topographical agnosia plus probable auditory processing issues. So adding more audio or spatial processing can make a game less accessible for me, not more.

What works better is text-first, low-spatial, low-audio, low-timing, low-social play.

But even “text-first” isn’t enough by itself.

A MUD can be technically readable and still be exhausting if I have to memorize routes, interpret maps, ask other players where to go, or manage hidden information in my head. What works well isn’t just text. It’s structured, queryable, action-ready text.

That’s one reason a MUD like Erion works well for me. Commands like dirs, where, mission info, quest systems, and searchable equipment tools reduce the hidden map-and-memory burden. They help me turn “I need to find this target” into a concrete next action.

That’s the same thing I want from my tools more broadly.

The best interfaces for me aren’t just technically accessible. They’re sustainable. They help me recover when I’m lost, review what happened, find the next step, and continue when my energy is low.

What accessible should mean #

For me, accessible doesn’t only mean “a blind person can technically use this.”

It means:

• I can use it when I’m tired
• I can recover when I get lost
• I can review information at my own pace
• I don’t have to rely on visual maps or spatial audio
• I don’t have to memorize every command
• I don’t have to constantly ask other people to rescue me
• I can understand what changed
• I can find the next action
• I can stop and come back later

Access isn’t only about whether something works once under ideal conditions.

It’s about whether the interface still works when my real brain and body show up.

Closing #

I’m not behind technology.

My needs just reveal something modern design often forgets.

Text-first, keyboard-first, desktop-first interfaces aren’t outdated. They can be some of the most liberating interfaces for multiply disabled people, especially when combined with modern accessibility APIs, cloud tools, and AI.

But the future I want isn’t voice-first AI, mobile-first AI, or black-box automation.

The future I want is intent-first computing.

I want tools that expose information clearly, make actions discoverable, accept messy human language, and help me move from need to action without forcing me to memorize every spell.

That isn’t laziness. It’s access.

But there’s a structural problem in how the most capable AI tools are currently built and priced. The setups that could help the most, autonomous agents that run persistently in the background, rely on usage-based token models. That architecture works fine if you’re an enterprise developer with a corporate credit card, but it falls apart completely when it hits the reality of a fixed income. Many disabled people, including me, live on strict low-income budgets. We don’t have infinite reserve capital to fund an erratic API loop.

The Illusion of Cheap Tokens #

When I first got Hermes Agent set up on my server, I was genuinely excited about the potential. I saw an assistant that could live where I do, learn my style over time, and build its own reusable skills. It felt like the ultimate Franken-System solution. To fund it, I purchased the Nous Portal Plus subscription. It costs twenty dollars a month and gives you twenty-two dollars in automated API credits. Looking at the raw model costs, where input tokens are billed at pennies per million, I thought that balance would easily stretch to cover an entire month of casual daily logging and administrative tasks.

I was completely wrong. That twenty-two dollar credit didn’t last a month; it lasted all of four days.

The issue wasn’t the complexity of my prompts or the length of the responses. The financial drain is a direct result of how autonomous agent pipelines function under the hood. Every single time an agent executes a turn, it resends a massive payload of background data to the model:

• The core identity instructions and system files
• Persistent long-term memory logs and user profiles
• Full tool indices and hosted skill definitions

If your background files and tool definitions take up thirty thousand tokens of base overhead, you’re paying that full input tax on every single iteration of a task. A basic multistep research loop or a script debugging session can quietly chew through hundreds of thousands of tokens in minutes. Before you even realize the agent is looping, your budget has triggered a critical overflow.

The Trade-Offs of the Flat-Rate Pivot #

Moving back to a standard consumer subscription isn’t a perfect victory; it’s a calculated compromise. When you dismantle a custom agent stack, you lose the precise control that made the system feel like a true extension of your mind. There are clear, frustrating regressions when you return to a standard cloud sandbox:

• Consumer platforms don’t maintain long-term context with the same deep, persistent stickiness over time.
• The environments aren’t nearly as customizable, meaning you can’t build your own automated skills or run custom Python backend routines.
• They don’t natively hook into the specific command-line utilities, local markdown systems, and tech-support files that build your daily workflow.

But right now, I don’t have a choice. Technical optimization doesn’t matter if the underlying architecture blows up your daily operations. An interface that’s highly capable but financially volatile fails the most basic test of assistive technology; it adds stress instead of removing it. Shifting to a fixed, flat-rate model means accepting fewer features and working within a tighter boundary, but it protects the one variable that consumption-based APIs destroy: a predictable budget.

The Budget Buffer Overflow #

Tearing down an environment that genuinely helped remove daily friction isn’t fun, but it’s a necessary change. The architecture just isn’t sustainable on a fixed budget. If an accessibility tool requires an unpredictable financial tax just to keep the background daemon running, it eventually becomes a source of executive strain instead of relief.

The next step isn’t giving up on automation; it’s changing the infrastructure. I’m moving my time-sensitive routines, like daily reminders and medication pings, down to local system cron jobs on my Raspberry Pi where the execution cost is exactly zero. For deep research and ecosystem indexing, I’m shifting to flat-rate consumer subscriptions. A fixed monthly fee removes the context window tax entirely, bringing my tech stack back into alignment with my financial boundaries.

I’ve tried most of the popular options. Notion collapsed under its own visual complexity. Obsidian’s graph view is a spatial nightmare for someone with topographical agnosia. Roam required too much upfront structure on days when I have nothing left for structure. Apple Notes doesn’t persist across my fragmented hardware setup.

The problem isn’t the apps. The problem is that “second brain” advice is written for people whose first brain works differently than mine. It assumes reliable working memory, the ability to review notes and recognize them as your own, enough executive function to maintain a capture habit, and the stamina to periodically reorganize a growing knowledge base.

When you have multiple cognitive and physical disabilities, those assumptions collapse. What I needed wasn’t a note-taking app. I needed a system that could catch what I drop, remember what I forget, act when I can’t, and do all of that without requiring manual maintenance from me on my worst days.

What I Use #

Pieces MCP Server #

Pieces is the backbone of my cross-session memory. Every code snippet I write, every command I run, every note I take in VS Code gets captured and indexed. When I come back to a project after a multi-day gap (which happens constantly with chronic illness), I can ask Pieces what I was working on and get a real answer instead of spending twenty minutes reconstructing context from scratch. It hooks directly into GitHub Copilot via the MCP server, so the AI assistant I’m already talking to has access to everything I’ve done.

Supermemory #

Supermemory handles the web research layer. When I’m reading articles, watching content, or doing deep research on a topic, Supermemory indexes it and makes it retrievable later. This matters because I can’t rely on browser history or my own recall. If I read something important two weeks ago, I won’t remember the article title, the site, or even the rough content. Supermemory gives me a way to search my own research history semantically, not just by URL or date.

Hermes Agent #

Hermes is my Pi-based personal agent. It handles the administrative layer of my life: calendar events, inbox triage, GoFundMe monitoring, and health data logging. Because it runs on my Raspberry Pi 5, it’s always available and costs nothing per query. It’s not as capable as a cloud-based model, but it doesn’t need to be. Its job is to handle the structured, routine tasks that drain my executive function when I try to do them manually.

VS Code and GitHub Copilot #

This is my primary development environment and the main interface I use for cognitive scaffolding. Copilot isn’t just autocomplete for me. It’s the working memory I don’t have. I can partially describe a problem, provide context from Pieces, and have Copilot help me reason through what I’m actually trying to do. It reduces the cognitive re-entry cost when I return to a task mid-session.

Hardware Reality #

My setup runs on a Raspberry Pi 5 (Hermes server), an old Dell laptop running Windows with WSL (primary dev machine), and an iPhone SE2. This isn’t aspirational hardware. It’s what I can afford and what works within my accessibility requirements. Any solution I build has to function on this stack.

Supporting Tools #

Guava Health handles symptom and medication tracking. Sophtron connects to my financial accounts so I can pull structured spending and balance data without navigating inaccessible bank interfaces. Both feed into the broader picture that Hermes can reference when I need to make decisions about pacing, capacity, or resource allocation.

Why Not Just Use ChatGPT? #

The short answer is that ChatGPT doesn’t know me. Every session starts from zero. There’s no persistent memory of what I was working on, what my disabilities are, what accommodations I’ve already explained, or what tools I’m using. For someone without memory and context continuity challenges, that’s a minor inconvenience. For me, it means spending the first ten to twenty minutes of every session rebuilding baseline context before I can do any actual work.

Beyond memory, there’s the control problem. I can’t build custom integrations into ChatGPT. I can’t give it direct access to my local files, my Hermes logs, or my Pieces snippets. The tool is powerful in isolation but sealed off from the rest of the stack I depend on.

How the Architecture Actually Works #

Capture layer: Pieces logs my coding context and notes. Supermemory indexes my research. Hermes logs structured health and administrative events.

Memory layer: Pieces LTM holds cross-session code and workflow history. Supermemory holds the web research graph. Hermes holds structured logs of routine tasks and health data.

Reasoning layer: GitHub Copilot pulls from Pieces via MCP and handles the technical and cognitive scaffolding. Gemini, accessible through Hermes, handles the administrative reasoning layer. Local models handle lightweight tasks where latency or cost matters.

Execution layer: Hermes executes scheduled tasks and administrative actions on the Pi. VS Code tasks and custom scripts handle the development execution layer.

Why this matters: The system reduces cognitive re-entry cost. When I come back to any task, the context is already there. I don’t have to reconstruct it from memory I don’t reliably have.

How They Help with Specific Struggles #

Memory loss: Pieces gives me a searchable log of everything I’ve worked on. I don’t need to remember; I need to search. Supermemory does the same for research. Hermes logs what it did and when so I can check my own history.

Executive dysfunction: Hermes handles the task-initiation problem for routine administrative work. I don’t need to decide to check my inbox, triage calendar conflicts, or log symptoms. The system does it on schedule.

Health tracking: Guava captures symptoms and medications. Hermes reads those logs and can surface patterns or flag anomalies when I ask. I don’t need to keep a manual health journal on days when I have nothing left.

Financial complexity: Sophtron pulls structured account data. This removes the need to log into inaccessible financial interfaces on high-cognitive-load days.

Accessibility barriers: The whole stack is keyboard and screen-reader accessible. I built it around NVDA on Windows and VoiceOver on iOS. Nothing in the workflow requires me to navigate a visual interface I can’t use.

Phone anxiety: Hermes handles communication tasks that would otherwise require phone calls. Copilot handles the drafting of emails and messages when word-finding is failing.

Physical limitations: Because most of the system runs on a server or in the background, I don’t need to be actively running it to benefit from it. Hermes runs while I rest.

Concrete Examples #

Coding session after a multi-day gap: I open VS Code, ask Copilot what I was working on, and Pieces surfaces the relevant snippets and context. Instead of spending twenty minutes reconstructing my own state, I’m back in the work within two or three minutes.

Low-energy logging on a bad day: I speak a rough health update into my phone. Hermes transcribes it, structures it, and logs it. I didn’t have to type, navigate, or maintain a format. The data is captured without friction.

Research without tab management: I read three articles on a topic. Supermemory indexes them. Two weeks later, I need to reference one of them. I search semantically and find it without needing to remember the title, the site, or that I even read it.

Phone-free communication: I need to respond to something that would normally require a phone call. I draft the response in Copilot, adjust it, and send it as a message or email. No call required.

What This System Doesn’t Look Like #

The AI gets things wrong. Copilot misunderstands context. Hermes occasionally fails to parse a task correctly. Supermemory misses things I’d consider important. These are real limitations, not edge cases.

The infrastructure requires maintenance. Scripts break. The Pi needs reboots. MCP connections time out. On my worst days, I don’t have the capacity to debug the system I depend on. This is a real vulnerability in the architecture.

The system doesn’t replace human connection or human support. It handles the administrative and cognitive overhead that would otherwise block me from accessing human connection. That’s a meaningful distinction.

The Closer #

This isn’t a productivity system. It’s a survival infrastructure. The goal isn’t optimization or efficiency or becoming a better developer. The goal is basic functionality on a body and a mind that require constant manual override just to stay operational.

If you’re multiply disabled and the standard second brain advice has never worked for you, this might be why. The advice is built for a different kind of nervous system. What works for me is a system that catches what I drop, remembers what I forget, and acts when I can’t, without requiring me to maintain it perfectly on the days when I have nothing left to give.

The Disclosure Trap #

I never know whether I should lead with my disability profile. The social cost is high regardless.

In tech spaces, not disclosing means screenshots I can’t see. People throw visual context at me without filtering. They assume I know basics I don’t. If I mention I’m blind, autistic, and chronically ill, the reaction shifts. I become a curiosity. People bombard me with questions. I answer. They move on. It never leads to connection. I’m a puzzle, not a peer.

Single-issue spaces run on assumption mismatches. If I show up in a blindness space, the philosophy is one-size-fits-all independence. If I need help, I’m doing it wrong.

If I enter an autistic space, I find it’s often built for people with lower support needs who can handle the visual and sensory load. There’s an implicit assumption that everyone present is high-functioning enough to manage. My support needs are higher than these rooms accommodate, a gap made wider by the limbo of being reevaluated.

Chronic illness spaces understand fatigue and brain fog. They might even understand neurodivergent sensory overload. But add blindness to the mix and their tools fall apart. They post infographics about pacing without alt-text. They share spoonie memes that I can’t read. They assume my main barrier is energy, not the fundamental way I interface with the world. When you live at the intersection of all three, you become an outlier in a room full of outliers. You’re too much for the spaces meant for the marginalized.

In disabled tech spaces, the dynamic flips again. Multiply disabled gets treated as shorthand for “not technical” or “needs heavy hand-holding.” I build AI agents on a Raspberry Pi. I self-host XMPP. I manage a Pelican site. None of that registers against the weight of a diagnosis list. The technical signal gets overwritten by the social read.

The Religion Penalty #

I’m a conservative Christian. In disabled spaces, this is treated with skepticism or outright hostility. Faith gets read as either a liability or a testimony. There’s no middle ground where belief just exists alongside disability without being treated as politically dangerous.

Most disability communities are liberal. The institutions that harm disabled people are often conservative ones. I understand why nobody wants to defend those institutions. But it leaves people like me with nowhere to sit. It also adds a constant vetting tax to every space I enter. I’m always checking to see if mentioning my Sunday study or reading from Gnostic texts will get me flagged before I even talk about code or my disabilities.

The AI Reflex #

If I manage to survive the disclosure trap and the religion penalty, there’s always the AI reflex.

Disabled Techies Slack is one of the spaces I’ve felt safest in. I still haven’t mentioned my AI setup there because the ambient baseline is hostile. The pattern isn’t a minority opinion. It’s the water.

One active member complains about a coworker who asked an AI to write a pull request in their style, and the thread gets dozens of sympathetic reactions. Another post describes a boss asking if anyone “cheated” by using AI to summarize a book club pick. When someone asks a practical question about using AI for benefits applications, they start by apologizing that they’re “normally pretty anti-genAI.”

The thread about ambient AI recording devices in doctor’s offices gets a pile of facepalm emoji reactions. Not a single person mentions that transcription tools help people with memory issues or cognitive load.

The parking spot without a van ramp gets called out as a real failure. Someone suggests an AI audit and gets instant skepticism. The skepticism is fair in that context, but nobody ever asks whether AI tools could have flagged that parking failure in the first place with proper prompts.

The space conflates assistive AI with lazy AI. A person using an agent to manage cognitive load isn’t the same as a coworker who asks a model to write their PR in their colleague’s style. One is an accommodation. The other is performative automation. Disabled spaces refuse to draw the line.

So I don’t bring up Hermes. I don’t mention that I use it to triage my inbox or log health data into Guava. I just absorb the cognitive tax of existing in a space I need for survival.

What I Actually Need #

I don’t need everyone to match my profile. That would be a very small room. I need a baseline of tolerance.

Tech spaces need to stop treating multiply disabled as synonymous with non-technical. Send the URL. Not the screenshot. Sending a URL instead of a screenshot is five seconds, not an hour. It’s low-effort, high-impact inclusion that takes zero time to learn.

Disabled spaces need to stop treating AI as a moral failing and start treating it as the spectrum it actually is. Accommodation and slop are not the same thing.

Faith spaces need to accept that disabled people can hold conservative beliefs without being a threat. Belief isn’t an attack vector. Similarly, disabled spaces need to be more accepting of different values and belief systems.

The Interface Between #

I stopped looking for a prebuilt community that accepts the full stack. I started building infrastructure instead.

Hermes Agent runs on a Pi. It checks my calendar. It manages my inbox. It monitors my GoFundMe. It logs health data. I built it because no existing group will advocate for me without asking me to sacrifice part of who I am. Hermes doesn’t just move data around. It manages the friction of a world not built for my stack. It reduces the cognitive load. It makes living in this world possible.

But it doesn’t fix the loneliness.

Handling the overhead just means I survive the day. I still go back to a screen where nobody sees the whole stack. I built the tool because I had to. It works. And I’m still not seen.

Sourcing Note: The examples in this article are not hypotheticals. They come from my own captured daily logs, technical sessions, and lived experiences. For a plain-language breakdown of the physical mechanics behind my diagnoses, see my Human Terms summary.

The Comfortable Lie of the Sum #

There’s a model of disability that feels mathematically tidy and is almost entirely wrong.

It goes like this: a person has Disability A and Disability B. Their overall difficulty is therefore $A + B$. If we build an accommodation for A, we’ve reduced the total load to just $B$. Progress has been made. The spreadsheet balances. Everyone goes home feeling useful.

In reality, disability isn’t an additive sum. It’s a resource contention issue. The correct relationship is closer to:

$$\text{Lived Difficulty} = (A \times B \times C) \cdot \text{System Design}$$

When a system design ignores the interaction between variables, and the accommodation built for Disability A requires a resource already depleted by Disability B, it acts as a multiplier. The result isn’t a reduction in load; it’s a buffer overflow.

System Specifications: Operating in “Manual Mode” #

Most people experience their bodies like a high-level Python script: “batteries included.” Breathing, swallowing, digestion, postural stability, and spatial awareness are handled by the standard library in the background. They’re low-overhead, automated processes.

I operate in what I call “Manual Mode.” My background processes aren’t automated; I’m manually managing the event loop.

I’m totally blind, autistic (I think, though this is being reevaluated), and live with Topographical Agnosia (TA), meaning I have no mental map and must navigate using raw logic and tactile coordinates.

Among other conditions, I also manage Idiopathic Intracranial Hypertension (IIH), which feels like a balloon being over-inflated behind my eyes; fibromyalgia, which leaves my nervous system stuck on a high-pain setting; gastroparesis and esophageal dysmotility, which cause my digestive system to operate unpredictably; and a physical height of 4'10". My airway is compromised by severe allergies, and my swallowing reflex doesn’t trigger automatically.

In a standard system, physiological survival is a background daemon. For me, it’s a blocking task in the foreground. It requires constant, conscious CPU cycles. When an accessibility solution for one condition requires a capacity another condition has already depleted, the system triggers a RecursionError and crashes.

Case One: The Spatial Audio Trap #

Audiogames are often held up as the gold standard for blind accessibility. The design assumption is generous and logical: if a player can’t see a 3D space, give them directional audio. Let sound carry the spatial information.

For a blind player with a standard spatial mapping “driver,” this works. For me, it’s a second barrier built directly on top of the first.

Directional audio requires the listener to hear a sound, locate it in 3D space, translate that vector into a navigable direction, and execute a command under time pressure. Because of Topographical Agnosia, my brain doesn’t have that spatial mapping library installed. I have to emulate it in software, manually calculating cardinal references, headings, and key mappings.

This emulation isn’t free. It costs the exact same CPU cycles I use to maintain “Manual Mode.”

When a game layers multiple simultaneous audio cues (enemy positions, environmental feedback, UI alerts), I’m not experiencing “immersive accessibility.” I’m experiencing critical resource exhaustion. My cognitive scheduler is saturated trying to decode the spatial audio stack while simultaneously issuing the manual commands to swallow, breathe, and stay upright. Something gets dropped from the queue. Sometimes it’s the game. Sometimes it’s my airway.

Case Two: Voice Interfaces and the Word-Finding Tax #

Voice interfaces are marketed as the ultimate “hands-free” accessibility win. They remove visual and motor barriers. But for me, they represent a high-latency API call with a massive failure rate, creating an intersection of three simultaneous costs:

First, executive retrieval. My word-finding isn’t always instant. A voice interface forces a real-time, high-priority retrieval call that my system may not have enough memory to fulfill, especially under cognitive load.

Second, the manual overhead. Speaking isn’t “just talking.” It’s a sequence of manual motor commands:

• Initiate controlled exhale
• Coordinate vocal cords
• Sustain pressure through the sentence
• Remember what I’m trying to say while doing all of the above
• Try not to trail off mid-command when I need to breathe or forget a word (voice interfaces don’t understand mid-sentence corrections or sudden stops)
• Suppress the urge to cough
• Resume normal breathing

A voice command is a taxing system call.

Third, the retry cost. When a voice interface mishears me, there’s no cache, no retry at a reduced cost. I have to re-execute the entire high-cost try/except block.

The accommodation designed to reduce input barriers (voice) directly multiplies the cost of the conditions it wasn’t designed to account for: executive retrieval load, speech coordination difficulty, and neurological manual overhead.

Case Three: The Environmental Deadlock of Overhead Reaching #

The multiplicative nature of disability isn’t limited to digital interfaces; it dictates my physical reality.

I’m 4'10". That’s an immutable hardware constraint. In a standard-height world, reaching over my head is a global variable I encounter constantly, from top kitchen cabinets to the highest fridge shelves and the microwave.

I actively try to avoid reaching overhead because it’s a high-cost physical function. Reaching over my head spikes my intracranial pressure. Doing it can easily trigger a multi-day system crash where I’m entirely nonfunctional. But avoiding it is incredibly difficult when the physical environment demands it.

Earlier today, this environmental mismatch created a classic system deadlock.

• The Dependency: I have seborrheic dermatitis on my scalp. Washing my thick hair is a non-negotiable maintenance task to prevent bleeding and infection. As it is, I already don’t shower as often as I should because of the energy and resource cost. I’m doing well if I can manage two showers a week.
• The Hardware Constraint: Reaching my showerhead and scrubbing my own scalp requires prolonged overhead reaching.
• The Software Conflict: I was in the middle of a brutal IIH and fatigue flare. My IIH felt barely manageable. I wanted to stay functional, but I knew that executing the “reach overhead” motion would crash my system for the rest of the day.

In a single-disability, additive model, an occupational therapist might suggest adaptations: a long-handled scalp massager for the shower, or a grabber tool for the high kitchen cabinets.

We didn’t have the scalp massager. But more importantly, the grabber solution is an incompatible API. Because I’m totally blind and have Topographical Agnosia, a visual grabber is useless, unless you want a mess of broken items. I can’t visually target an item on the top shelf, and I don’t have the internal spatial mapping grid required to guide a 3-foot pole to an object I can’t see.

I was stuck in a deadlock: preserve my system uptime but risk an infection flare, or execute the reach and trigger a critical pressure crash.

The math looked like this: $$\text{Environmental Demand (Overhead Reach)} \times \text{IIH Flare} \times \text{Missing Spatial API} = \text{System Lock}$$

I couldn’t solve the equation alone. I had to wait for a “subroutine” (my mom coming home from work) to assist with the manual labor of washing my hair. This isn’t a lack of “independence”; it’s a failure of an environment that assumes a standard height, a single-threaded body with infinite energy reserves, and the ability to use standard visual adaptations.

Case Four: The Medical Hardware Incompatibility (CPAP) #

Standard medical devices often assume a baseline physiological API. When that API is non-standard, the device becomes completely unusable. My experience with a CPAP machine for sleep apnea is a textbook example of compounding hardware, physiological, and bureaucratic failures.

Because I breathe through both my mouth and nose, I’m forced to use a full-face mask. But my body doesn’t have an automatic swallow reflex. Overnight, saliva pools on my face with nowhere to go, turning the inside of the mask into a mess and creating a constant physical irritant.

The compounding variables don’t stop at fluid management:

• Inaccessible UI: The machine itself (a ResMed AirSense 10) was inaccessible. I had to rely on my mom to adjust the settings.
• Missing Dependencies: My severe allergies are worsened by dry air. The machine’s built-in humidifier was ineffective without heated tubing.
• Bureaucratic Multiplication: Medicaid refused to cover the heated tubing, claiming it wasn’t “medically necessary”: an additive-model policy that ignores the multiplicative reality of my allergies and airway. I had to pay the $134 cost out of pocket just to attempt to use the machine.
• System Rejection: The combination of the irritating straps (even with special covers), the pooling saliva, the dry air, and my sensory processing issues created an unbearable sensory load. I would take the mask off in the middle of the night without even realizing I had done it.

The math for this “solution” was: $$\text{Full-Face Mask} \times \text{Missing Swallow Reflex} \times \text{Sensory Load} \times \text{Bureaucratic Denial} = \text{Hardware Rejection}$$

The CPAP has been packed in a box for years because it’s functionally unusable. Instead, I now sleep in a hospital bed, a necessary environmental mitigation for the combined realities of my IIH, GI conditions, and unsupported sleep apnea.

Case Five: Independence as a Force Multiplier for Harm #

At age eighteen, I was enrolled in a transition program at the Texas School for the Blind designed to build independence skills. The program’s design assumption was well-intentioned and purely additive: “Blindness accommodations + Increased Demands = A prepared, independent graduate.”

The program wasn’t designed for a student who was also autistic, managing undiagnosed IIH, and operating in a body that required conscious neurological oversight for basic survival functions.

They had no variable for resource competition. The increased independence demands consumed the cognitive and neurological reserves I required to manage every other system. My body began to collapse. Fibromyalgia symptoms emerged as a permanent system error. Neurological overload became my baseline state. The harder I tried to meet their standard of independence, the worse every other condition became, because their definition of independence required me to spend resources I was already allocating just to stay alive.

When I communicated this, the institution’s additive model had no way to process it. Because their spreadsheet didn’t have a multiplication operator, my physical collapse was interpreted as resistance, psychological instability, and a failure of motivation. My valedictorian status was removed. My assistive technology was confiscated. Scholarships were withdrawn. Had my mom not intervened and fought for me to return the next year, I wouldn’t have been allowed to walk the stage at graduation. The institution’s failure to account for the multiplicative nature of my disabilities resulted in active punishment for the predictable consequences of their design choices.

This is what happens when a system designed around one access need at a time applies the additive model to a multiply-disabled body: it produces institutional punishment for the predictable consequences of an unfunded mandate.

Memory-Backed Evidence from Captures #

The proof of this compounding friction exists throughout my daily logs. Using Pieces, an AI memory assistant running in my code editor, I can trace these conflicts in my own automated captures:

• 2026-04-15 (Browser capture, article review): “The Barrier of Voice Interfaces… Between word-finding issues and the energy required to maintain the ‘Manual Mode’ of my breathing and speech, real-time voice commands are a huge neurological challenge.”
• 2026-04-15 (Browser capture, article analysis): “The Spatial Trap of Sound… Audiogames… rely on directional audio… My brain can’t process this data… it drains the same limited energy bank I use for manual mode physical survival.”
• 2026-04-18 (Browser capture, dictation friction): “Voice assistants don’t understand unless the command is perfectly formed… if I forget a word, use the wrong one…” and “This is a classic accessibility mismatch.”
• 2026-04-13 (Browser capture, contact preferences): “Text over Voice: I don’t do well with voice calls or ephemeral audio.”

These captures show the same pattern repeating across contexts: an accessibility pathway that helps one user profile creates a higher resource tax for mine. That’s multiplication, not addition.

The Resource Conflict Is the Disability #

My most consistent struggle is the intersection of spatial demand and manual survival.

Whether I’m navigating a physical room, parsing a deeply nested dictionary in Python, or trying to reach a microwave on a top shelf, my brain is emulating a missing capacity. This “Spatial Emulation” and “Manual Mode” compete for the exact same thread.

$$\text{Spatial Demand} \times \text{Manual Overhead} = \text{Physical Crisis}$$

A demanding cognitive or physical task doesn’t just result in frustration or normal fatigue. It produces an intracranial pressure spike and a multi-day system outage. The interaction between these conditions isn’t a nuisance; it’s an exponential threat.

Multiplicative Design: A New Baseline #

The additive model produces a checklist. Does the tool have a screen reader API? Check. Keyboard navigation? Check. High contrast? Check. Reduced motion? Check. Switch control? Check. Audio descriptions? Check. Voice commands? Check. Accommodation complete.

The multiplicative model requires a fundamentally different question: What happens when a user needs all of these features simultaneously, and they conflict?

• What happens when the screen reader’s verbosity settings create cognitive overload for a user with executive dysfunction?
• What happens when keyboard navigation requires spatial mental modeling that competes with the user’s limited physical resource pool?
• What happens when the user would benefit from switch control, but it doesn’t work with screen readers?
• What happens when the user has a condition affecting their ability to type but also relies on a screen reader, which doesn’t work with either voice commands or switch control?

Multiplicative design requires modular architecture:

• Modular Accommodation: Features must not be monolithic. A user should be able to toggle spatial audio off while keeping screen reader support on. Don’t force one “win” at the cost of another.
• Resource Awareness: Understand that every accessibility layer has a “cost.” An interface that requires 10 seconds of sustained vocal output from a user whose attention is partially allocated to breathing isn’t a “free” resource.
• Intersection as the Norm: When a system is designed with a “blind user” or “autistic user” as its primary persona, it’s underspecified. The CDC estimates that over half of adults with disabilities have more than one. Designing for the intersection isn’t an “advanced feature.” It’s stable code.
• Transparency over Perfection: Sometimes needs conflict. The solution isn’t to declare one need more legitimate. Expose the configuration, accept incompleteness, and allow the user to manage their own resource allocation.

Conclusion #

Two disabilities aren’t twice the difficulty. They’re potentially the square of it, or the cube, depending on how deeply the resource pools and the system’s own design choices interact.

The additive model is comfortable because it’s legible. Line items are easy to audit, fund, and mark complete. The multiplicative model is uncomfortable because it demands we reason about collisions, compounding costs, and the reality that a solution for one user can be an active harm to another.

I’m not an edge case. I’m the predictable result of a world that designed for one disability at a time and then encountered a user running multiple high-overhead processes on a system with no reserve capacity.

The math was never going to balance using addition. It’s time to change the operator.

Python-Focused Optimization (Dev Log) #

To manage these multipliers, my technical environment is strictly optimized for low cognitive load and keyboard-first efficiency:

• CLI over GUI: I use fzf, ripgrep, and fd to find files. This replaces the “spatial” need to browse a visual folder tree with a simple, linear text-search task.
• uv for Package Management: The speed and reliability of uv reduce the “wait-time” and unexpected errors that often trigger sensory spikes during environment setup.
• Structured Data: I prefer Markdown and JSON over complex visual interfaces because they allow me to navigate via logical structure rather than visual layout, minimizing spatial emulation overhead.

Allergies and Postnasal Drip #

Most people think of allergies as just sneezing or itchy eyes, but for me, they’re a physical barrier. My body produces a constant supply of extra mucus that doesn’t drain right. This mucus pools in my stomach, which makes my gastroparesis symptoms and nausea much worse. It also clogs my airway, which is already small, forcing me to breathe through both my nose and mouth just to get enough air. When I’m sleeping, this makes my sleep apnea even harder to manage. If I don’t use a heated tube with my breathing machine, my throat gets so dry and irritated that I can’t breathe well the next day.

I also have to keep a bucket near me at all times because I often need to spit out mucus, which can be a lot and can come up suddenly. Blowing my nose often doesn’t work well because the mucus is thick, and my nasal passages are narrow, so I tend to snort it back into my throat and then spit it out instead. This constant battle with mucus is exhausting and adds another layer of complexity to managing my health, as it affects multiple systems and can exacerbate many of my other conditions. On days when the mucus is thicker or more abundant, it’s easier to choke or have a coughing fit, which can be both painful and dangerous, especially if it disrupts my breathing or sleep. The constant presence of mucus also means that I have to be very careful about my hydration and the products I use on my skin and in my nose, as certain ingredients can make the symptoms worse or trigger flare-ups. Overall, allergies and postnasal drip are a big part of my daily experience and need constant management so they don’t make my other health issues worse.

The Condition List #

Neurological and Pressure-Related #

Septo-Optic Dysplasia (SOD) #

This is the “root” condition I was born with. It means certain parts of my brain and the systems that regulate my hormones didn’t develop fully. It’s the foundation for many of my other health challenges.

Total Blindness #

I have no light perception or visual input, so I navigate the world using touch, sound, and structured text data. I also have prosthetic eyes that are purely cosmetic and don’t provide any visual function.

Idiopathic Intracranial Hypertension (IIH) #

This is high fluid pressure inside my skull. It feels like a balloon is being over-inflated behind my eyes and brain, creating constant pressure and severe pain. It also causes a constant “whooshing” sound in my ears that never completely goes away, known as pulsatile tinnitus. This worsens with any movement, strain, or change in position. On some days, possibly due to stress or hormonal fluctuations, the pain can become so intense that I’m completely incapacitated. I had a stent placed in my brain to help drain the excess fluid, but it hasn’t fully resolved the issue.

Empty Sella Syndrome #

Because of the long-term pressure from IIH, the structure in my brain that holds the pituitary gland has been flattened. This complicates how my body responds to stress and manages its “fuel.” This also causes hormonal imbalances that contribute to fatigue and weight gain.

Occipital Neuralgia #

This causes pain in my neck and the back of my head, and sometimes even facial pain. It feels like a constant, deep ache that can flare up into sharp, stabbing sensations with certain movements or pressure. Because of the pain, I have to be very careful with how I move my head and neck, which can make simple tasks like looking up or turning my head difficult and exhausting. I also can’t sit with my neck unsupported for long periods, as it can trigger severe pain.

Migraines #

Beyond just a headache, these are episodes of pulsing pain and extreme sensitivity to “sensory noise” like sound or touch. It can be difficult to tell a migraine apart from the constant pain of IIH or occipital neuralgia, but my migraines often come with nausea and sensitivity to sound.

Pain and Skin Management #

Fibromyalgia #

My nervous system is stuck on a high-pain setting. It creates a heavy, “flu-like” exhaustion and widespread aching that never fully subsides. It also causes what I call nerve pain, which is a sharp, shooting sensation that can happen anywhere in my body without warning. This nerve pain can be triggered by even the slightest touch or movement, making it difficult to find comfortable positions or engage in physical activities. The constant pain and fatigue from fibromyalgia also contribute to my overall energy depletion, making it hard to maintain a regular routine or participate in social activities.

Sometimes, I have a feeling like bugs crawling under my skin, which is a common symptom of fibromyalgia known as “formication.” This sensation can be extremely uncomfortable and distracting, further impacting my ability to rest or focus on tasks. Being blind, I don’t always know if the sensation is real or just a nerve issue, which adds another layer of confusion and discomfort.

Rheumatoid Arthritis #

An autoimmune condition where my body’s defense system attacks my joints. It causes deep, stiff aching and physical damage over time. It also makes my hands and fingers feel swollen and weak, which can make it difficult to grip objects or perform fine motor tasks. The pain from rheumatoid arthritis can also flare up unpredictably, making it hard to plan activities or maintain a consistent level of function. Additionally, the inflammation can cause fatigue and a general feeling of being unwell, which adds to the overall burden of managing my health. This is worst in my hands, but it can also affect my knees and other joints, making walking and standing for long periods difficult.

Hidradenitis Suppurativa #

A chronic skin condition that causes painful, recurring lumps and tunnels under the skin, usually in areas where skin rubs together. I get these in my armpits, on the back of my neck, under my breasts, and in my groin. They can become infected and require drainage, which is a painful process that can take weeks to heal. The constant discomfort and risk of infection from these lesions make it difficult to find comfortable clothing or positions, and they can also cause significant emotional distress due to their visibility and chronic nature. I also have to be careful about which deodorants or skincare products I use, as certain ingredients can trigger flare-ups. The pain from these lesions can be severe enough to interfere with sleep and daily activities, and the healing process can be slow and unpredictable, which adds to the overall challenge of managing this condition.

Seborrheic Dermatitis #

A recurring skin irritation that causes painful, itchy patches on my scalp and face and behind my ears. If scratched, these patches can bleed and become infected, which adds another layer of discomfort and health management to my daily life. The constant itching and irritation can make it difficult to focus on tasks or get restful sleep, which can further exacerbate my fatigue and overall health issues. I have to be very careful about the products I use on my skin and scalp, as certain ingredients can trigger flare-ups or make the symptoms worse, which adds another layer of complexity to managing this condition.

Digestion and Swallowing Mechanics #

No Automatic Swallow and Dysphagia #

The physical reflex to move food or liquid down my throat doesn’t always work. I have to manually “trigger” the swallow to prevent choking. If I don’t, I drool or have food come back up, which can be embarrassing and uncomfortable. This also means I have to eat very slowly and carefully, which can be exhausting and time-consuming. I also have to be mindful of the types of food I eat, as certain textures can be more difficult to swallow and increase the risk of choking.

Additionally, I sometimes experience a sensation of food getting “stuck” in my throat, which can be both painful and frightening, especially if it triggers a coughing fit or makes it difficult to breathe. I also regularly choke on saliva, which leaves me feeling unwell for the rest of the day. Pills are especially difficult, and I often have to take them with a lot of water and in a specific position to ensure they go down safely. I once had a barium swallow test, which involved swallowing a chalky liquid while being X-rayed to see how it moved through my throat. The results showed that my swallowing reflex is very weak and uncoordinated. The doctor had to tell me to keep swallowing the liquid several times because it kept coming back up. I didn’t even realize it was happening and remember being confused about why the doctor was asking me to keep swallowing when I felt like I had already swallowed it. This test really highlighted how much of my swallowing process is manual and how easily it can go wrong, which has been a constant challenge in my daily life.

Esophageal Dysmotility #

The muscles in my food pipe don’t move in the correct rhythm, making it physically difficult and tiring to move food toward my stomach. I often have to sit upright for a long time after eating to help gravity do the work and use liquid to help move food down. This also means I have to be very careful about what I eat, as certain foods can get stuck or cause more discomfort. The sensation of food not moving properly can be very distressing and can lead to anxiety around eating, which adds another layer of difficulty to managing my nutrition and overall health. If I lie down too soon after eating, I can feel the food or liquid pool and come back up, which can be both uncomfortable and embarrassing. I also have to be mindful of portion sizes, as eating too much at once can exacerbate the symptoms and make it even harder to manage the dysmotility.

Large Tongue #

A physical barrier that makes the mechanical acts of speaking and swallowing more taxing on my energy. My tongue is large enough that during a sleep study, the doctor tried to see my airway and couldn’t, even with a tongue depressor. This contributes to my sleep apnea and makes it more difficult to manage my breathing and swallowing, especially when I’m in pain or fatigued. It also means I can bite my tongue more easily, which can lead to painful sores and further complications with eating and speaking. The size of my tongue also makes it more difficult to keep my mouth closed while sleeping, which can exacerbate my sleep apnea and lead to more disrupted sleep. Because of the size of my tongue, along with postnasal drip, I breathe through both my nose and mouth. If I try to breathe only through my nose, I don’t feel like I’m getting enough air and can get lightheaded.

Gastroparesis #

My stomach is partially paralyzed. It doesn’t empty into the small intestine correctly, which means food sits still for a long time, causing intense nausea and pain. This is severe enough that I don’t get enough nutrients from food, so I’m now on oral medical food shakes as my primary source of nutrition. I have to be very careful about what I eat, as certain foods can exacerbate the symptoms and lead to more discomfort. The sensation of food sitting in my stomach can be very distressing and can lead to anxiety around eating, which adds another layer of difficulty to managing my nutrition and overall health. I also have to eat very small meals throughout the day, as larger meals can make the symptoms worse and increase the risk of vomiting. The nausea from gastroparesis can be so severe that it sometimes leads to vomiting, which can further deplete my energy and nutrients, making it even harder to manage my overall health. Due to my allergies, postnasal drip, and GERD, my body produces a lot of mucus, which can pool in my stomach and make the symptoms of gastroparesis worse.

GERD and IBS (Mixed Type) #

Unpredictable digestive distress that can cause sudden pain or “system upsets” regardless of what I’ve eaten. Having IBS mixed type means I can experience both constipation and diarrhea, sometimes even alternating between the two in a short period of time. My GERD isn’t the typical “heartburn” type. It’s more of a reflux caused by the dysfunction of my esophagus and stomach, which can lead to a constant feeling of acid or food coming back up, even when I’m not eating. This can be very uncomfortable and can interfere with my ability to eat and sleep. The unpredictability of these symptoms can make it difficult to plan meals or social activities, as I never know when a flare-up might occur. It also leads to unusual hiccups. I don’t just hiccup. I hiccup and then burp, and the hiccups are hard and painful, like a spasm in my diaphragm. These can last for hours and are very exhausting.

Respiratory and Sleep Systems #

Manual Breathing #

I breathe automatically, but when I’m focused on something or in a lot of pain, I might forget to breathe deeply or regularly. This can lead to lightheadedness and increased fatigue, so I have to consciously remind myself to take deep breaths, especially during stressful or painful moments. I also sometimes catch myself breathing too heavily and have to consciously slow down to avoid hyperventilation, which can cause dizziness and exacerbate my symptoms.

Sleep Apnea #

My breathing stops repeatedly while I sleep. This means my body stays in “emergency mode” all night and never gets actual rest. Because of my combination of conditions, I can’t use a CPAP machine, which is the standard treatment for sleep apnea. Because of breathing through both my nose and mouth, I have to use a full-face mask, but the straps irritate my skin and scalp. Since I don’t swallow automatically, drool pools on my face all night, which is both uncomfortable and makes the mask a mess.

My allergies and postnasal drip also mean that I have to use a heated tube, or else my throat and nose get dry and irritated, and it’s harder to breathe the next day. Medicaid also won’t cover the heated tube, saying it’s not medically necessary, so I have to pay for it out of pocket. Finally, the mask and straps are uncomfortable enough with my sensory issues that I often find myself taking it off in the middle of the night, which defeats the purpose and leaves me feeling exhausted and unrested in the morning. The combination of these factors makes it very difficult to manage my sleep apnea effectively, which has a significant impact on my overall health and quality of life.

Non-24-hour Sleep-Wake Disorder #

My internal clock doesn’t follow the 24-hour sun cycle. My “day” shifts forward constantly, leaving me in a state of permanent jet lag. This, combined with chronic fatigue from all my other conditions, means I have no sleep schedule and often feel like I’m living in a fog. The constant shifting of my sleep-wake cycle can make it difficult to maintain a regular routine or participate in social activities, as I never know when I’ll be awake or asleep. It also contributes to my overall fatigue and can exacerbate the symptoms of my other conditions, making it even harder to manage my health effectively. I’ve tried many times to get on a regular sleep schedule, but it never works. It might seem to work for a few days, but then I have a day of bad fatigue or pain and spend the day sleeping, which shifts my schedule forward and throws everything off again. This cycle has been ongoing for years, and it’s something I have to constantly manage and adapt to.

Information Processing and Mental Health #

Autism and Neurodivergence #

Right now, we don’t know if I’m autistic or something else, but I have a lot of the same traits. I have sensory processing issues, social communication differences, and a need for routine and structure. This also means I have a different way of experiencing and processing pain and fatigue, which can make it harder for others to understand what I’m going through. My sensory processing issues can make certain textures or sounds overwhelming, which adds another layer of difficulty to managing my daily life and health. The social communication differences can make it harder for me to express my needs and experiences to others, which can lead to misunderstandings and feelings of isolation. The need for routine and structure can make it difficult to adapt to changes in my schedule or environment, which can be particularly challenging given the unpredictability of my health conditions. Additionally, being neurodivergent means that I may have a different way of processing and coping with stress, which can impact how I manage my health and interact with others. It’s important for those around me to understand that my neurodivergence is an integral part of who I am and how I experience the world, and that it can influence how I manage my health and communicate my needs.

I also find speaking difficult, and it can be hard to find the right words or express myself clearly. This worsens when I’m in pain, fatigued, or anxious, which can make it even harder to communicate with others and advocate for myself. I tend to prefer to write rather than speak for this reason, but even writing is hard for me. One trap of being highly verbal is that everyone seems to believe that words are easy for me, but they aren’t. I have to work hard to find the right words and put them together in a way that makes sense, which can be exhausting and time-consuming, and speaking requires coordinating my mouth, breathing, thoughts, swallowing, and tongue, which is a lot. This is especially true when I’m trying to explain my health conditions or advocate for myself, as I want to make sure I’m being clear and accurate, but it can be difficult to find the right language to do so. If someone rushes me or interrupts me while I’m trying to explain something, it can throw off my train of thought and make it even harder for me to communicate effectively. I also have a hard time with small talk and social niceties, which can make social interactions more draining and less enjoyable for me.

I also stim, which means I have certain repetitive movements or behaviors that help me regulate my sensory input and manage my emotions. This can include things like rocking, fidgeting, vocalizations, chewing, or just needing to always be doing something with my hands, and it can be a crucial coping mechanism for me, especially when I’m in pain or feeling overwhelmed. However, stimming can also be misunderstood by others, and I have to be mindful of how it might be perceived in social situations, which can add another layer of stress and self-consciousness to my interactions with others. One of my stims, skin picking, can be particularly problematic, as it can lead to painful sores and infections, especially when I’m in a lot of pain or feeling anxious. I have to be very careful about managing this stim and finding alternative ways to cope with my emotions and sensory input, which can be challenging but is necessary for my overall health and well-being.

Topographical Agnosia #

I have no “mental map” and can’t visualize the layout of a room or how two places connect. I move through space using tactile landmarks and coordinates rather than mental pictures. This means I have to be very careful about how I navigate new environments, and I often have to ask for help or use assistive technology to get around. It also means that I can easily get lost or disoriented, especially in unfamiliar places, which can be both frustrating and anxiety-inducing. I have to rely heavily on my other senses, such as touch and sound, to create a mental map of my surroundings, but this can be difficult and time-consuming, especially in complex environments. Additionally, I have to be very mindful of my surroundings and use consistent landmarks to help me navigate, which can be challenging in crowded or changing environments.

This also means that I have to be very careful about how I organize my living and working spaces, as I rely on tactile cues to find things and move around safely. If the environment is too noisy or crowded, it can be overwhelming and make it even harder for me to navigate and find my way around, which can lead to feelings of anxiety and disorientation. I still get lost in my own home sometimes, especially if I’m in a different room or if something has been moved around. I have to rely on my memory of the layout and tactile cues to find my way, but it can be easy to get turned around or disoriented, especially if I’m in pain or fatigued. This applies to digital spaces as well. I have a hard time navigating websites or apps that aren’t designed with clear structure and organization, as I can’t create a mental map of the layout. I have to rely on consistent navigation and clear labels to find what I need, and even then, it can be difficult and time-consuming to navigate complex digital environments. A phone is much harder to navigate than a computer because of the smaller screen and more limited tactile cues, which can make it more difficult for me to use effectively.

Severe Executive Dysfunction #

The “starter motor” for my brain is often broken. Even when I have the desire and a plan to do a task, my brain can’t always send the signal to my body to begin. This is severe enough that tools people often recommend for executive dysfunction, like to-do lists or reminders, don’t work for me. I can have a clear plan and the motivation to do something, but my brain just won’t send the signal to start, which can be incredibly frustrating and lead to feelings of guilt or shame. This also means I have to be very careful about how I structure my day and manage my energy, as I can’t rely on willpower or motivation to get things done.

I have to use a lot of external supports and accommodations to help me manage my executive dysfunction, but even with those, it can still be a struggle to get started on tasks, especially when I’m in pain or fatigued. This can lead to a lot of procrastination and difficulty maintaining a regular routine, which can further exacerbate my health issues and make it even harder to manage my overall well-being. Additionally, the executive dysfunction can make it difficult to plan and organize my thoughts and actions, which can lead to a lot of mental clutter and overwhelm. I often have a hard time breaking down tasks into smaller steps or figuring out where to start, which can make even simple tasks feel insurmountable. This can lead to a lot of avoidance and difficulty following through on commitments, which can impact my relationships and overall quality of life. Even when I do manage to get started on a task, I can have a hard time sustaining the effort and focus needed to complete it, which can lead to a lot of unfinished projects and a sense of frustration and disappointment in myself.

Severe Time-Blindness #

I don’t “feel” the passage of time. Five minutes and five hours feel identical to me, making external timers a mechanical necessity for my survival. Without them, I can easily lose track of time and end up in dangerous situations, such as forgetting to eat or take medication. This also means that I have to be very careful about how I structure my day and manage my time, because I can’t rely on my internal sense of time to keep me on track. I have to use a lot of external supports and accommodations to help me manage my time-blindness, such as alarms, timers, and reminders, but even with those, it can still be a struggle to stay on schedule, especially when I’m in pain or fatigued.

This can lead to missed appointments, forgotten tasks, and difficulty maintaining a regular routine, which can further exacerbate my health issues and make it even harder to manage my overall well-being. Additionally, the time-blindness can make it difficult to plan and organize my day, as I can’t accurately estimate how long tasks will take or how much time I have available, which can lead to a lot of mental clutter and overwhelm. I often have a hard time breaking down tasks into smaller steps or figuring out how to allocate my time effectively, which can make even simple tasks feel insurmountable. This can lead to avoidance and difficulty following through on commitments, which can impact my relationships and overall quality of life. Even when I do manage to stay on schedule, I can have a hard time sustaining the effort and focus needed to complete tasks within a reasonable timeframe, which can lead to a lot of unfinished projects and a sense of frustration and disappointment in myself. This is exacerbated by my non-24 and chronic fatigue, which can make it even harder to manage my time effectively and stay on track with my schedule.

Probable CPTSD #

My nervous system often stays in “survival mode” due to experiences with medical and institutional harm, making it hard to feel physically safe. Trauma for me shows up as freezing, fawning, or anxiety, and it can be triggered by needing to work with systems meant to support disabled people, such as healthcare providers, social workers, or even certain accommodations, people around me fighting, trying to do independent living tasks where I was previously pushed, or even loud noises. This can make it very difficult for me to access the care and support I need, as I may avoid seeking help or advocating for myself due to fear of retraumatization. It also means that I have to be very careful about how I interact with these systems and the people within them, as certain triggers can lead to a shutdown or panic response that makes it impossible for me to communicate my needs effectively. Additionally, the CPTSD can impact my overall mental health and well-being, leading to feelings of anxiety, depression, and isolation, which can further exacerbate my physical health issues and make it even harder to manage my overall health.

Major Depressive Disorder and Generalized Anxiety Disorder #

The persistent mental fatigue and “background noise” of worry that comes from the high cognitive load of manually managing all these systems. This also means that I have to be very careful about how I manage my mental health, because the symptoms of depression and anxiety can make it even harder to manage my physical health and advocate for myself effectively. The depression can lead to feelings of hopelessness and a lack of motivation, which can make it difficult to engage in self-care and seek out support, while the anxiety can lead to constant worry and fear about my health and future, which can be overwhelming and exhausting. Additionally, the combination of depression and anxiety can lead to a lot of mental clutter and overwhelm, making it difficult to focus on tasks or make decisions, which can further exacerbate my health issues and impact my overall quality of life. It’s a constant balancing act to manage both my physical and mental health, and I have to be very mindful of how they interact and impact each other in order to maintain some level of stability and well-being.

Metabolic and Physical Management #

Obesity #

A metabolic challenge tied to the hormonal issues from SOD and the difficulty of physical movement while in high pain. This also contributes to my sleep apnea and makes it more difficult to manage my overall health. The excess weight can put additional strain on my joints, which can exacerbate the pain from rheumatoid arthritis and make it even harder to move around. It also increases the risk of other health complications, such as diabetes and heart disease, which adds another layer of concern to managing my health. Additionally, the obesity can lead to social stigma and discrimination, which can impact my mental health and overall well-being.

I’ve tried many diets and weight management strategies, but the underlying hormonal and metabolic issues make it very difficult to lose weight and keep it off, which can be frustrating and disheartening. Even if I lose a little, it usually comes back, and sometimes I gain more, which can feel like a constant uphill battle. You can also be overweight and malnourished at the same time, which is something I experience due to my gastroparesis and difficulty absorbing nutrients from food.

Urinary Incontinence #

A loss of bladder control that requires constant physical management and planning for safety. This means I have to be very careful about how I manage my bathroom needs, as I can’t always make it to the bathroom in time or may have accidents, which can be both embarrassing and uncomfortable. It also means that I have to plan my activities and outings around my bathroom needs, which can limit my ability to participate in social activities or go out for extended periods of time.

Additionally, the incontinence can lead to skin irritation and infections if not managed properly, which adds another layer of health management to my daily life. I have to use a combination of protective products and frequent changes to manage this condition effectively, which can be both time-consuming and costly. I also get my supplies through Medicaid, which means I have limited control over the brands and types of products I can use, and sometimes the products they provide aren’t the best fit for my needs, which can lead to discomfort and further complications. The incontinence can also lead to feelings of shame and embarrassment, which can impact my mental health and overall well-being, making it even harder to manage my health effectively.

Why This Page Exists #

Managing these conditions is a full-time job that happens in the background of everything else I do. If I’m resting, quiet, or slow to start a task, it’s because one or more of these systems is currently requiring my manual attention. This page is meant to help people understand the “why” behind my daily experience, so they can better empathize with what I’m going through and support me in ways that are meaningful and useful. It’s also a way for me to organize my thoughts and experiences around my health, and to have a reference that I can share with others when needed. I hope that by sharing this information, I can help others understand the complexities of living with multiple chronic conditions and the importance of empathy and support in managing health challenges.

Some links on this page may be affiliate or referral links. That means I may earn a small commission or account credit if you sign up through them, at no extra cost to you. I only recommend things I have personally used or found genuinely helpful.

Site Resources #

These pages provide context for my work, language, and accessibility perspective.

• Beyond Blindness: A family resource for blind students, families, and advocates when blindness is not the whole story.
• Accessibility Notes: Notes on accessibility, usability, and real-world barriers that affect disabled users.
• Human Terms: Plain-language explanations of disability, access, technology, and systems concepts.
• Connect: Places where I can be found online and communities I lead.

How I Access Technology #

These are the core tools I use to access computers, phones, and the web.

• NVDA (NonVisual Desktop Access): My main screen reader. It’s free, open source, and highly customizable, which matters a lot in my development workflow.
• Humanware Brailliant BI 40X: My refreshable braille display. It’s essential for reading and navigating digital content in a way that works for me.
• VoiceOver: I use this on my iPhone for mobile accessibility. It lets me use my phone with gestures, braille, and speech.
• Google Chrome: My preferred browser for web-based tasks. It works well with my screen reader, and most of my web work happens there. Chrome Autobrowse can also help when I run into inaccessible sites.
• Betterbird: My preferred email client. It’s a Thunderbird fork with better accessibility and performance. With the Provider for Google Calendar add-on, it works smoothly with both Google Calendar and Google Tasks.

Programming and Site Building #

These are the tools I use for coding, site work, and technical learning.

Core Stack #

• VS Code: My main editor for Python, Lua, and SQL. It provides a stable, text-first environment that works well with my screen reader.
• Hugo: The static site generator I use for this website. I switched from Pelican because Hugo builds much faster, requires fewer plugins, and has accessible themes that need far less tweaking. Its templating is also easier for me to work with than Jinja2.
• The uv Package Manager: A very fast Python package manager I use for project management and tool syncing.
• GitHub: The platform I use for version control and collaboration.
• Windows Subsystem for Linux (WSL): I use this to run a Linux environment (openSUSE) while keeping the accessibility features I rely on in Windows.
• GitHub Copilot: An AI coding assistant that helps me write code faster and catch mistakes sooner.

CLI and Terminal Workflow #

• fzf, ripgrep, and fd: Command-line search and navigation tools I use every day. They are keyboard-first, produce clean text output, and help me browse filesystems and codebases without visual interfaces.
• Tmux: A terminal multiplexer that keeps my sessions alive across disconnects. I use it to run persistent processes on WSL.
• openSUSE: My Linux distro inside WSL. It gives me full control of my dev environment while I stay on a Windows machine with reliable screen reader support.

Productivity, Communication, and Digital Security #

These tools lower my cognitive load and help me stay organized and secure.

Writing and Daily Organization #

• TextExpander: I use this to manage repetitive typing, reduce physical fatigue, and avoid having to remember exact strings of text. If you buy a plan through my referral link, I may earn account credit at no extra cost to you.
• Ditto Clipboard Manager: Lets me keep track of multiple copied items, which cuts down on extra typing.
• Foam: A VS Code-based note system I use for private notes and personal knowledge management.

Email, Calendar, and Communication #

• Gmail: My main email service. I rely on its accessibility and integration with other Google tools.
• Google Calendar: I use this to manage my schedule and appointments. It works well enough with my screen reader for the way I use it.
• Google Tasks: I use this to keep track of my to-dos. It integrates well with Google Calendar and Gmail, which helps me stay organized.
• Google Workspace Starter: I use Google Workspace Starter for domain email. It gives me professional email for my domains while still letting me use the Google tools and accessibility workflows I already know.
• Google Voice: I use Google Voice for texts and calls from my computer. Being able to manage communication from my PC matters because desktop workflows are often much easier for me than phone-first ones.
• Discord: I use Discord for community chat. Its API integration capabilities also make it useful for workflow automation experiments.
• Unigram (Telegram): My preferred Telegram client on Windows. Its accessibility makes it a reliable messaging platform on both desktop and mobile.
• Pushover: A notification service that delivers alerts I can’t miss, like cron job results, health reminders, or critical system failures. It works across my phone and browser.

Security, Hosting, and Network #

• 1Password: My password manager. It’s a key part of my online security and peace of mind.
• Cloudflare: I use this for DNS and domain management. This site is hosted on Cloudflare Pages, which has been reliable and accessible for me.
• Tailscale: A zero-config VPN that connects my devices into a private network. I use it for secure device access without opening ports or wrestling with complex network setup.
• PureTalk: My mobile service provider. They offer affordable plans and good enough coverage for where I live.

AI Tools and Memory Systems #

These are AI tools and memory systems I use or have tried to reduce cognitive load, preserve context, and support coding, writing, accessibility analysis, planning, and automation experiments.

Active Tools #

• ChatGPT: One of my main AI support tools. I use it for coding help, writing support, accessibility analysis, executive-function support, and turning rough thoughts into structured plans.
• Google Gemini: I use this for AI-assisted writing, brainstorming, research, and organizing rough thoughts when I’m overwhelmed.
• Google AI Pro: I use Google AI Pro through my personal Google account for Gemini, Google Drive storage, and AI features that are bundled into the plan. It’s especially useful because it fits into the Google ecosystem I already use and can be shared with family.

Experimental or Occasional #

• Ollama: A local AI model runner I plan to use more after my computer upgrade, especially for experiments that would otherwise be limited by API usage or subscription caps.
• Hermes Agent: An AI agent platform I’ve experimented with for automated workflows and personal assistance. I’m not currently running it because cloud model usage became too expensive, but I may revisit it with local models through Ollama.

Hardware and Custom Solutions #

These are tools and custom solutions that make my physical setup work better for me.

• Keychron K10 Max: This mechanical keyboard provides the tactile response I need to know exactly where my hands are.
• Apache Restoration and Design: My mother’s contracting business. She has built custom physical solutions for me in the past that respect my tactile needs and energy limits.
• HydroFlask: Staying hydrated is a mechanical necessity for managing my health. I use these because they are durable and keep water at a consistent temperature.

Health and Medical Nutrition #

Managing multiple chronic conditions takes a systems approach.

• Dr. Kenny Mittelstadt: My functional medicine practitioner and “root cause detective.” He works virtually with patients in Texas, California, and Florida.
• Guava Health: A health tracking platform I use to monitor my symptoms, medications, and trends. This helps me and my doctors make better decisions.
• TheraBath paraffin bath: I use this for heat therapy to manage pain and improve circulation in my hands.
• Almay deodorant: I use this deodorant because it’s gentle on my skin and doesn’t cause irritation, which is important for managing my sensory sensitivities. Unlike most deodorants, it doesn’t trigger my skin issues, making it a reliable choice for daily use. I’d include a link, but for some reason their site doesn’t list deodorants.

Learning and Theology #

These resources support my writing, advocacy, and spiritual exploration.

• Boot.dev: A platform I used to build my technical foundations in Python, Linux, Git, and core programming concepts. The skills I built there still inform my accessibility testing and technology writing today.
• Ledgeroo: A gamified accounting program I use for practical bookkeeping and financial workflows for my family’s business. Its progressive challenge system helps me work through accounting concepts one step at a time.
• Exercism: A hands-on coding practice platform I’ve used for structured exercises, especially for people who learn well by solving small problems.
• Codecademy: A self-paced learning platform I’ve used for programming and computer science foundations.
• World Bible Plans: A resource I use for structured study and reading plans.
• BibleGateway: A persistent text resource for looking up and comparing different Bible translations.
• Gnosis.org: The primary library I use for exploring broader Christian history and Gnosticism.

Entertainment and Media #

These are my main sources for music, audiobooks, videos, and other media.

• YouTube: I use YouTube for a wide range of content, from educational videos to entertainment. It works well enough with my screen reader, and it’s useful on days when I don’t feel well enough to read or focus deeply.
• Spotify: My go-to music streaming service for playlists, everyday listening, and Christian music.
• Audible: I use Audible for audiobooks and podcasts. It’s an easy way for me to find and listen to audiobooks.

Accessible Gaming #

These are games I’ve found more accessible because they prioritize menus, text, and systems over spatial navigation or timed reactions.

• Trimps: A deep incremental game that’s entirely menu-driven and works perfectly with NVDA.
• Evolve: A text-based civilization simulation focused on optimization.
• A Dark Room: A minimalist text-based game focused on resource management through menus.
• EmpireMUD: A text game that uses coordinates and pathing to help me navigate without needing a mental map.
• Stellar Aeon: A text-based space exploration game with a strategy focus.
• Erion: A MUD (Multi-User Dungeon) that focuses on exploration and social interaction through text commands.

Technical and Disability Communities #

• Disabled Techies Slack: A group for tech workers with disabilities. It’s one of the places where disabled people in tech can compare notes, ask questions, and support each other.
• AppleVis: A community for blind and low-vision Apple users, with reviews, guides, and community posts about accessibility.
• r/blind: A subreddit where blind and visually impaired people share experiences, ask questions, and discuss accessibility and blindness.
• Program-l: A mailing list for blind programmers. It’s helpful for questions about programming, tools, and accessibility as a blind developer.
• Touching-python: A mailing list for blind Python programmers. It’s useful for Python-specific questions from other blind programmers.
• r/spicyautism: A subreddit for autistic people with higher support needs. I find it validating because it talks about parts of autism that often get ignored in lower-support-needs spaces.

Note: Some links on this page may be affiliate or referral links. I only recommend tools, services, and communities I’ve personally used or found genuinely helpful.

My focus is practical. I help teams understand where real users get blocked, confused, overloaded, or excluded.

I don’t provide legal accessibility audits, WCAG certification, VPATs, or formal compliance sign-off. Instead, I provide lived-experience feedback on whether a product is actually usable, understandable, and humane.

My Perspective #

I don’t just look for broken code; I look for broken experiences.

My testing is grounded in daily experience with blindness, neurodivergence, chronic illness, fatigue, cognitive load, and assistive technology. I pay attention to barriers that automated tools and checklists often miss.

I evaluate technology through the framework I document in my Accessibility Notes., including:

• Keyboard-Centricity: Is the tool fully usable without a mouse?
• Screen Reader Usability: Does the experience work clearly with NVDA and standard keyboard navigation?
• Cognitive Load: Does the interface overwhelm the nervous system or require too much memory?
• Information Persistence: Is important information available as stable text, or does it disappear too quickly?
• Fatigue and Real-World Use: Does the workflow still work for someone with limited energy?
• Low-Spatial Access: Does the product assume visual layout, spatial memory, quick reactions, or spatial audio?

Services I Offer #

Accessibility and Usability Testing #

I can test a specific website, app, workflow, form, onboarding process, account setup, or feature using NVDA and keyboard navigation.

This can include feedback on:

• Screen reader navigation.
• Keyboard access.
• Form labels and error messages.
• Focus order and lost context.
• Confusing or overwhelming workflows.
• Places where a user may get stuck or be unable to recover.
• Whether the product works for users with multiple disabilities, not blindness alone.

Product Feedback from a Disabled User #

I can provide practical feedback on whether a product feels usable, predictable, and respectful from the perspective of someone who relies on assistive technology and has variable energy.

This is a good fit for:

• Disability-focused products.
• Health and chronic illness tools.
• Education platforms.
• Productivity tools.
• Community platforms.
• Apps or websites that want feedback from real disabled users before launch.

Game and Interactive Media Accessibility Feedback #

I can evaluate games and interactive experiences for barriers that affect blind players and disabled users with additional access needs.

My feedback can include:

• Whether the game relies too heavily on spatial audio.
• Whether navigation is memory-heavy or confusing.
• Whether quick reactions are required.
• Whether important information is available as stable text.
• Whether the experience works for someone who cannot rely on sight, fast movement, or strong spatial orientation.

Developer Tool, CLI, and Documentation Feedback #

I can test developer tools, command-line workflows, setup instructions, and technical onboarding from the perspective of a disabled accessibility advocate, technical generalist, and screen reader user.

This can include:

• Trying setup instructions as written.
• Identifying missing or confusing steps.
• Testing command-line output with a screen reader.
• Noting where documentation assumes sight, mouse use, or prior knowledge.
• Giving feedback on whether a tool is approachable for disabled learners and developers.

Focused Bug and Issue Notes #

I don’t replace a full QA team, but I can provide focused issue-style notes for specific workflows.

Depending on the project, my notes may include:

• What I tried.
• What I expected to happen.
• What actually happened.
• Steps to reproduce the issue.
• Why the issue matters for disabled users.
• Suggested next steps or questions for the team.

Good Fit For #

My services may be a good fit for:

• Small teams that want practical accessibility feedback before launch.
• Developers building tools for disabled users.
• Companies that want feedback from an actual NVDA and keyboard user.
• Game developers who want to understand nonvisual and low-spatial-access barriers.
• Teams working on developer tools, CLI tools, documentation, onboarding, forms, or account workflows.
• Researchers looking for lived-experience feedback from a multiply disabled technology user.
• Disability organizations or community projects that want technology to be easier to use.

Example Projects I Can Help With #

I can help with projects such as:

• Testing a signup, login, onboarding, or checkout flow.
• Reviewing whether a web app is usable without sight or a mouse.
• Testing a form or settings page with NVDA and keyboard navigation.
• Trying a developer tool or CLI workflow and identifying confusing steps.
• Reviewing a help article, setup guide, or documentation page from a screen reader user’s perspective.
• Testing a game for nonvisual, low-spatial-access barriers.
• Giving feedback on a disability, health, education, productivity, or community platform.
• Reviewing whether a workflow creates too much cognitive load or fatigue.

Possible Deliverables #

Depending on the project, I can provide:

• A short list of the biggest accessibility and usability barriers.
• Issue-style notes with steps to reproduce.
• Screen reader and keyboard workflow feedback.
• Notes on cognitive load, fatigue, information persistence, and recovery from errors.
• Feedback on onboarding, account setup, forms, settings, documentation, or technical workflows.
• A plain-language summary of what worked, what broke, and what would help.

How I Work #

I work best asynchronously and with a clearly defined task or workflow.

A good project usually includes:

• A product, page, app, game, or workflow to test.
• A short description of what users should be able to do.
• Any test account, download link, or setup instructions I need.
• A flexible deadline when possible.

I can provide feedback in a structured format, such as:

• What I tried.
• What happened.
• Where I got stuck.
• Why it matters.
• Suggested next steps.

What This Is Not #

To make sure we’re a good fit, here are the boundaries of my services:

• Not a legal compliance audit: I don’t provide WCAG certification, VPATs, ACRs, or legal accessibility sign-off.
• Not full regression QA: I don’t replace a dedicated QA team or test every feature in a large product after every release.
• Not visual design review: I don’t evaluate visual polish, branding, color, or layout aesthetics.
• Not emergency support: I work best with flexible, asynchronous projects, not urgent same-day deadlines.

What I do provide is practical, lived-experience feedback on whether a product is usable, understandable, and humane for disabled users.

Let’s Work Together #

If you’re building a product, tool, game, website, or workflow and want practical feedback from a disabled assistive technology user, I’d be glad to hear from you.

You can book a usability testing session directly (60 minutes, $75) or reach out through my Contact Page with a short description of what you would like tested and what kind of feedback would be most helpful.

If you’d like to support my work beyond a testing engagement, visit my Support page for other ways to help, including Ko-fi, GitHub Sponsors, and my GoFundMe.

Have you ever thought about how much of your life gets handled by background processes? For most people, basic functions like swallowing and breathing are automatic, handled by the system’s kernel without any conscious input. For me, these are manual system calls. I call this “Manual Mode.” I don’t have a background thread for swallowing. Every single swallow is a conscious execution; if I lose focus, I find myself choking or realizing I’ve stopped clearing my throat entirely. My breathing follows a similar logic. While my body technically keeps me alive, it doesn’t do it efficiently. If I’m deep in a coding problem, I forget the instruction to breathe deeply. My system starts running on shallow air, my intracranial pressure spikes, and I end up with a system crash in the form of a debilitating headache. Every breath is a manual command, and the CPU cycles required to keep my physical hardware running are cycles I can’t use for anything else.

This “Manual Mode” isn’t just about my physical body; it extends to the space I inhabit. If navigating my own skin requires a manual override, navigating my own home requires a total recalculation. This is where Topographical Agnosia begins.

The Logic Tax of Space #

If the manual effort of breathing and swallowing is the physical tax I pay to keep my body running, Topographical Agnosia (TA) is the logic tax I pay to exist in space. Most people have an internal sense of direction that automatically knows the layout of a building. My brain doesn’t store that data. For me, living in a house, even one I’ve lived in for three years, is like following a set of text-based directions where I can only see one line at a time. As soon as I act on a direction, the instruction disappears.

There’s a deep irony in being a stranger in your own home. Knowing where the kitchen is isn’t automatic; I solve a complex puzzle to get there every time I stand up. Success depends on finding a landmark, like the specific texture of a rug or the edge of a bookshelf, to logically deduce my location. Rather than walking through my house, I’m manually navigating a series of if/then statements. When I open a door, it’s a brand-new discovery. Every trip for a glass of water is a manual mission that drains the same precious energy I need just to keep my physical system stable.

Topographical Agnosia provides the missing map, but my neurological “Manual Mode” provides the dead battery.

Together, they create a reality where I can’t afford the luxury of spatial navigation. I simply don’t have the spare cycles to spend on a world that refuses to stay still.

Most parts of the world are designed for people who can build mental maps, or at least glance around and use visual cues to deduce their location. As a totally blind person with TA, this is a constant source of anxiety and exhaustion. The world is a maze without landmarks, and every step is a gamble. However, in the realm of programming, especially with tools like the Command Line Interface (CLI), I found a refuge. In programming, you don’t have to walk through a directory structure or visually scan for files. You can call a name, and the data appears. In a terminal, a file’s location isn’t a point in space; it’s a string of characters. I don’t need a map to find it; I just need its name. This is what I call teleportation. The logic of code allows me to bypass the need for spatial navigation entirely. Instead of trying to build a mental map of my codebase, I can rely on semantic logic to get me where I need to go. This is why I transitioned from frontend development, which relies heavily on spatial metaphors, to CLI and logic-focused tools that allow for this kind of teleportation.

The Frontend Trap: A Map with No Landmarks #

The Semantic Anchor of HTML #

My early days with web development were deceptively comfortable because of HTML. To a screen reader, and to my brain, HTML is just a nested list of facts. An <h1> isn’t “big text at the top of the page”; it’s simply the First Important Thing. An <ul> isn’t a vertical list on the left sidebar; it’s a Collection of Related Items. A <main> element feels like a labeled container for the main content. A <nav> is a container for navigation links, something that as a screen reader user, I can easily understand and identify. HTML leverages my verbal memory. I don’t need to visualize where a button sits on a screen; I just need to know what that button is. In this world, everything has a name and a role.

It’s a predictable environment where “what” is always more important than “where.” As long as I stayed within the semantic lines of well-structured HTML, the digital world felt like a place I could finally navigate without a manual override.

The Shifting Maze of CSS #

When I moved into CSS and JavaScript, the illusion of stability shattered. The Box Model isn’t a box; it’s a set of invisible layers that can change based on the content inside them. The z-index isn’t a stack; it’s a constantly shifting hierarchy that can rearrange itself based on the smallest change.

Responsive design isn’t a layout; it’s a shape-shifting entity that can look completely different on various devices. These concepts aren’t just hard to understand; they’re impossible to map in my brain. They feel like a maze that changes its walls every time I try to navigate it. The spatial metaphors that these technologies rely on are completely inaccessible to me. I can’t build a mental model of how elements relate to each other in space, and the constant changes mean that even if I could, it would be outdated the moment I try to use it. This is why I found myself increasingly frustrated with frontend development and drawn to the more stable, logic-based world of CLI and logic-focused tools.

The Jackhammer of Change #

The rapid pace of change in frontend development is a kind of virtual construction noise for me. When I attended school at the Texas School for the Blind and Visually Impaired (TSBVI), I had regular orientation and mobility (O&M) training lessons to help me learn how to navigate physical spaces. These lessons were extremely difficult at the best of times. The teacher would try to teach me a route, sometimes 15 or more times, but when they asked me to walk it with minimal guidance, I would often fail. If I had any clue where I was going, and we walked into a construction zone, the noise and chaos would completely disrupt my ability to orient myself.

The constant changes in frontend development feel like that construction noise. Every new framework, every new design trend, every new tool is like a jackhammer blasting through the mental map I’m trying to build. It’s not just overwhelming; it’s actively disruptive to my ability to learn and navigate the space of frontend development.

The “C” Friction: The Neighborhood of Addresses #

If frontend development is a shifting maze, programming in C is like being given a neighborhood of street signs without ever being able to see the neighborhood itself. In C, you have memory addresses and pointers that allow you to access specific locations in memory. For most programmers, this is a powerful tool that allows for efficient memory management. For me, it’s like being handed a list of street names and house numbers without ever being able to visualize the layout of the neighborhood. I can understand that a pointer is a reference to a specific memory address, but I have no mental map of where that address is in relation to anything else.

It’s a constant struggle to keep track of these coordinates in my head, and it feels like trying to navigate a city with no landmarks, no sense of direction, and no capacity to visualize the layout. This is why I found C to be particularly challenging and why I gravitated towards languages and tools that allow for more semantic navigation rather than spatial navigation.

Bit-Level Blindness #

This issue also shows up when I try to work with bitwise operations. For example, earlier today I was working on the Grains exercise on Exercism, which requires you to calculate the number of grains of wheat on a chessboard. One way to do this is to use bitwise shifts to calculate powers of 2. I was able to do this in Python without any issues because I could focus on the logic of the calculation, but in C, when I tried to shift 1 by 64 bits to calculate the total number of grains on the board, the number overflowed, and I couldn’t understand the output because I had no mental model of how the bits were being manipulated in memory. This was like trying to understand a complex machine without ever being able to see its inner workings.

The Cost of Emulation: Resource Conflicts #

Recognizing that my struggle with C pointers or CSS layouts isn’t just a math problem matters. It’s a Resource Conflict. Because of my Topographical Agnosia, my brain can’t see space. To compensate, I have to use raw, conscious logic to build a temporary, fragile mental model of where a pointer or a div might be. This emulation of spatial awareness is a high-power process. It drains the same limited energy bank I use for my “Manual Mode” physical survival.

When I’m forced to act as the “Manual Memory Manager,” I’m effectively stealing CPU cycles from my own physical safety. If I spend thirty minutes trying to visualize how 64 bits are arranged in a register, I’m not just doing math; I’m exhausting the neurons that tell me how to stay upright and keep my airway clear. For me, a system overload in code can lead to a literal system crash in my body.

The Logic Haven: Teleporting with Code #

Teleporting with Python and SQL #

If memory management in C is like walking to an address, Python and SQL are like teleportation. In Python, I can import a module or call a function by name, and the logic of the codebase allows me to access the functionality I need without ever having to walk through a directory structure. In SQL, I can query a database by specifying the table and conditions, and the data appears without me having to navigate through a file system.

This is the kind of teleportation I find incredibly liberating. It lets me bypass the need for spatial navigation entirely and rely on semantic logic to get me where I need to go. Where C relies on manual memory management, Python has automatic garbage collection. This means I don’t have to keep track of memory addresses or worry about freeing memory; I can just focus on the logic of my code. Similarly, SQL abstracts away the underlying data storage and allows me to interact with data using a high-level query language. These tools allow me to teleport to the functionality I need without having to navigate through a spatial representation of the codebase. This is why I transitioned from frontend development, which relies heavily on spatial metaphors, to CLI and logic-focused tools that allow for this kind of teleportation.

The Sanctuary of the Shell #

To function at my best, I need quiet, both literally and figuratively. The Command Line Interface (CLI) provides that quiet, and I often think of it as my Quiet Room. Fuzzy searching with fzf lets me jump to a file by name and open it directly. When I need to find text, ripgrep searches the entire codebase to locate specific strings instantly. Using fd allows me to find files by extension quickly without ever having to scan through directories. These tools allow me to bypass the need for spatial navigation and rely on semantic logic to get me where I need to go. Instead of trying to build a mental map of my codebase, I can use these tools to teleport directly to the functionality I need, which is a much more efficient and accessible way for me to work.

The Spatial Trap of Sound #

Audiogames are often held up as the gold standard for blind accessibility, but for me, they represent another spatial trap. Most of these games rely on directional audio, requiring the player to hear a sound and immediately understand its exact coordinates in a 3D environment. You’re expected to tell where a noise is coming from and act on it instantly. My brain can’t process this data. Because I lack the internal mapping driver to handle directional cues, I often move my character the wrong way. A sound to the left requires a manual calculation rather than an intuitive movement.

When a game layers multiple sounds at once, it creates a literal sensory overload. It’s a buffer overflow for my mind. My CPU cycles are so busy trying to sort the “Where” of the noise that I lose the ability to manage my own physical system. This is why I find refuge in incremental, text-based games like Trimps or Evolve. They offer complexity and progress through pure facts and data points, demanding no spatial awareness and offering total semantic stability.

The Barrier of Voice Interfaces #

Voice interfaces present a similar barrier. Between word-finding issues and the energy required to maintain the “Manual Mode” of my breathing and speech, real-time voice commands are a huge neurological challenge.

Text-based programming is my solution. It provides a persistent, stable environment where I can read and re-read at my own pace. Using comments as landmarks and relying on the logical structure of the code lets me connect the dots. The code stays still on the screen long enough for me to understand the logic, which is crucial for my ability to function effectively.

Redefining Independence #

In the world of blind education, specifically within organizations like the National Federation of the Blind (NFB) or schools like TSBVI, there’s a heavy emphasis on “Independence” at all costs. The goal is often to prove that a blind person can do exactly what a sighted person does, in exactly the same way. We’re taught that success is walking a route alone, 15 times over, until it’s memorized.

But for someone with Topographical Agnosia and a physical “Manual Mode,” this version of independence is a resource leak. When I’m told that I must be able to navigate a complex spatial environment or a shifting frontend layout to be independent, I’m being told to ignore my own hardware limitations. Trying to force a brain without a mapping driver to act like a cartographer doesn’t lead to independence; it leads to a total system crash.

Success Through Interdependence #

Redefining success was necessary. In the physical world, I was taught that independence meant walking the route; in the digital world, I learned that success means teleporting. I don’t walk alone anymore, choosing instead to collaborate with my tools to offload the spatial work. They handle the file finding and memory management, which frees up my limited CPU cycles to do what I do best: solve problems. Using a CLI isn’t a crutch or a lesser way of working; it’s an optimized workflow that offloads the spatial “where” so I can focus on the logical “what.” This is interdependence, and for me, it’s the only sustainable way to live.

Conclusion: The Logician’s Victory #

If you can’t read the map, stop trying to be a cartographer; start being a logician. We spend so much energy trying to fix our broken parts to fit a spatial world, but code doesn’t require us to be spatial. It only requires us to be logical. When I stopped trying to visualize the neighborhood of C pointers and started teleporting through Python and the CLI, I didn’t just become a better developer. I became a person who could finally breathe.

To my fellow multiply-disabled individuals who feel like they’re failing at standard accessibility: maybe the tools aren’t built for your nervous system. Standard accessibility often still relies on the metaphor of a map. If that map exhausts you, come to the Quiet Room of the terminal. In the CLI, you aren’t lost. You’re exactly where you need to be, just one command away from anywhere else.

• Website: Lanie: Faith, Tech, and Advocacy — My writing, advocacy, and projects.
• Email: lanie@lanie.work — The most direct way to reach me.
• Mastodon: @RareBird15@allovertheplace.ca — My main social home base for accessibility advocacy and tech talk.
• LinkedIn: laniecarmelo — Professional networking and published writing.
• Facebook Page: Lanie: Faith, Tech, and Advocacy — Community posts and updates.
• GitHub: RareBird15 — Source code for Everrealm, WordPredictor, and other projects.
• Reddit: Laniebird91 — Disability and tech discussions.

Get New Posts by Email #

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Communities I Lead #

My advocacy is rooted in the belief that technology should be an act of care. I lead several text-centric communities designed to reduce cognitive load and offer humane alternatives to traditional social media.

Multiple Disabilities Peer Support #

These groups, collectively known as MultAbilities, focus on the unique challenges of navigating overlapping disabilities.

MultAbilities (Slack) #

A working community for people with multiple disabilities and the allies who want to help build with us. This is where MultAbilities Academy is taking shape. Includes Sable, an AI assistant who can answer questions about the project, explain concepts, and help you find what you need.

• Join: MultAbilities on Slack

MultAbilities (GroupMe) #

Our main outpost for people who prefer the simplicity of a linear text stream or SMS-based participation.

• Join: MultAbilities on GroupMe

MultAbilities (Groups.io) #

A structured, low-pressure space for long-form discussion and resource archiving.

• Join: MultAbilities on Groups.io

MultAbilities (Discord) #

A space for real-time text conversation and community engagement.

• Join: MultAbilities on Discord

Multiple Disabilities Peer to Peer Support Group (Facebook) #

A broad hub for connection and shared community history. This group keeps its original name to maintain its established presence following a community merger.

• Join: Multiple Disabilities Peer to Peer Support Group on Facebook

Educational Advocacy #

Online Education for the Disabled #

A group for discussing and improving accessibility in digital learning environments.

• Platform: Groups.io
• Join: Online Education on Groups.io

Faith-Based Support #

Imago Dei Disability Fellowship #

A dedicated space for Christians with any disability to find peer support and spiritual community.

• Platform: GroupMe (Accessible via App or SMS)
• Join: Imago Dei on GroupMe

Book Time With Me #

I offer three types of appointments. All sessions are conducted over Google Meet.

• Usability Testing Session (60 min, $75) — Moderated accessibility and usability testing for websites, apps, and assistive technology. I’m a blind, multiply disabled screen reader user with professional testing experience.
• Collaboration Call (45 min, free) — For collaborators, partners, researchers, or anyone interested in working together on writing, advocacy, or accessibility projects.
• Community Chat (30 min, free) — A one-on-one conversation for community members, advocates, or anyone who wants to connect.

I live with Non-24 sleep disorder and chronic fatigue, which means my waking hours are unpredictable. I may need to reschedule at the last minute. I’ll always give as much notice as I can, and I appreciate your understanding. If I cancel, I’ll offer the next available slot or work with you to find a time that fits.

Community Philosophy #

Across all these spaces, I prioritize:

• Low Cognitive Load: Predictable systems that don’t overwhelm the nervous system.
• Accessibility First: Tools that are fully navigable via screen readers (specifically NVDA) and keyboard.
• Energy-Based Planning: Workflows that respect limited physical and cognitive energy.

The modern tech industry is built on a specific promise: buy into one ecosystem, and your digital life will effortlessly sync.

But that convenience is a privilege. When you live with blindness, multi-system chronic illness, neurodivergence, and topographical agnosia (a spatial processing disability that prevents my brain from forming mental maps, making it as easy to get lost in a complex software menu as it is on a physical street), brand loyalty is a luxury. You can’t choose a platform simply because it integrates well. You choose a platform because it allows you to function. You have to constantly weigh the cognitive load of one operating system against the screen reader reliability of another.

Because no single tech giant has solved accessibility across all their products, I can’t stay within one walled garden. Instead, I’ve been forced to build a “Franken-System.” By stitching together the most accessible parts of Windows, Apple, Linux, and Google, I’ve built a tech stack that actually works for me. But it comes at a steep cost. I’ve traded away seamless integration just to secure the basic ability to use my own devices.

The Hardware Split (Windows PC and iOS) #

My hardware setup is the clearest example of this compromise. For my desktop environment, Windows is the most accessible platform because the assistive technology is abundant and reliable. I avoid Mac entirely due to its heavily spatial design, high cost, and long-standing issues with VoiceOver on macOS. While I love the Linux command line, a native Linux graphical desktop isn’t a viable option for me. The Orca screen reader lacks the robust features of NVDA, there’s far less assistive software available, and the environment demands unpredictable, cognitively expensive configuration just to get basic things working.

Then there’s the mobile side. Between my coordination issues, topographical agnosia, fatigue, and blindness, I generally dislike using phones. But when I must use one, the iPhone is my only practical choice. iOS provides the most predictable screen reader behavior and a highly accessible app ecosystem. I avoid Android because the screen readers do not work as well for me, and the operating system feels slower and less accessible overall.

This isn’t just a tax on my time and energy; it’s a financial tax. I can’t opt for a budget Android phone or a cheap ChromeOS laptop. I’m forced into higher price brackets simply because those are the only devices that offer the baseline accessibility I need to function.

This split setup is where the integration tax hits hardest. Because I use an iPhone with a Windows PC, I completely lose the continuity features that come with using a Mac. My workflow is full of friction points:

• Messaging: Integration is clunky and unreliable. It completely breaks for group messages.
• Notifications: I can see notifications on my PC, but clicking on them doesn’t open the corresponding app or provide a seamless experience.
• Audio Routing: When calls come in, my phone audio sometimes starts playing through my PC speakers unexpectedly. This is disorienting and disruptive.
• Hardware Gaps: If I answer a call on my PC, the audio routes correctly, but my current desktop setup lacks a microphone to talk back.
• Clipboard: There’s no native way to sync text between my iPhone and Windows PC. Third-party clipboard sync solutions exist, but they are often inaccessible or unreliable. This forces me to manually transfer links or notes using email or cloud storage.
• File Management: I can’t easily access files stored on my PC from my iPhone. I have to use Google Drive as a middleman, which adds extra steps and potential points of failure.
• App Ecosystem: Many apps I use on my PC don’t have iOS versions, and vice versa. This forces me to find alternative tools that may not be as effective or accessible.
• Voice Assistants: I can’t use Siri on my iPhone to control my PC, and I can’t use Copilot on my PC to control my iPhone. This lack of cross-device voice control is a missed opportunity for accessibility.
• Ecosystem Features: I miss out on features like Handoff, Universal Clipboard, and iCloud syncing that would make my workflow smoother if I were fully within the Apple ecosystem.

This lack of integration creates a constant friction point in my workflow. I’m forced to find workarounds for tasks that should be seamless.

The Developer’s Compromise (Linux via WSL) #

Even though a native Linux desktop is inaccessible to me, I still need Linux. As a developer, working in plain text is highly accessible and efficient. I spend most of my time writing Python and Bash scripts, and the Linux command line is the best place to do that.

When my last PC died, I tried to set up a dedicated Linux machine using a Raspberry Pi running Stormux (based on Arch Linux ARM). It was a failed experiment. Because the accessibility support was so poor, a task that took one step on Windows took ten steps on the Pi. It demanded far too much cognitive energy and physical fatigue, making it a completely unsustainable environment.

This is where my Franken-System needs a compromise. Instead of fighting with dedicated Linux hardware, I use Windows Subsystem for Linux (WSL). WSL is the perfect bridge. It allows me to stay inside the accessible Windows desktop environment while giving me full access to the Linux command line tools I need. I now run openSUSE in WSL, which gives me the best parts of Linux without ever having to navigate an inaccessible graphical interface. I can run my Python scripts, use fzf for fuzzy finding, and manage my development environment all within WSL.

The AI Barrier #

The latest layer of my Franken-System is Artificial Intelligence. AI has the potential to be a massive cognitive prosthetic, helping with everything from word-finding to summarizing complex documents. But even here, the walled gardens are closing in.

Windows integrates Copilot, but I’ve found it lacking in memory and flexibility. There’s no way to swap it out for a different AI provider that might better suit my needs. Apple is the same. iOS uses Siri, and if you want more advanced features, your only option is ChatGPT. This lack of choice means I can’t tailor my AI assistance to my specific disabilities.

Furthermore, the AI features that could help me the most (like Recall for memory support or better native text suggestions) are often locked behind specific hardware. On Windows, many of these features require a Copilot+ PC. These devices use ARM-based processors. While these processors are efficient, ARM-based Windows is notorious for poor compatibility with specialized assistive technology. While major screen readers are starting to add support, many of the smaller, specialized tools I rely on simply don’t work. I’m forced to choose between the cutting-edge AI that could support my neurodivergence and the stable hardware I need just to run my screen reader.

The Service Disconnect (Google and Amazon) #

The software layer of my setup is just as fragmented. I rely heavily on Google services like Drive, Search, and Gemini. However, I have to run them on Apple hardware because the screen readers on Android and ChromeOS fall short for my needs. Using Google services on an iPhone creates a functional but highly disconnected workflow. I’m constantly jumping between apps that were never built to work together.

Then there is the frustration of voice control. Smart assistants like Amazon Alexa have massive potential to save my physical and cognitive energy. But in reality, current voice assistants punish non-standard speech. If I stumble over a word, pause to think, or speak less clearly due to fatigue, the assistant simply times out or throws an error. A tool that could be life-changing is rendered mostly unusable because it expects me to speak with robotic perfection.

Because this system is held together by digital duct tape, it’s incredibly fragile. A single update from any one of these companies can break a workaround I have relied on for years. I live in a constant state of low-level anxiety, knowing that my ability to work or communicate depends on companies that don’t even know my specific configuration exists.

Conclusion #

Maintaining this Franken-System is exhausting. Beyond the technical hurdles, there’s a significant cognitive cost to this setup. Switching my brain from the keyboard-driven logic of NVDA on Windows to the touch-based gestures of VoiceOver on iOS is a constant context switch. It adds a layer of mental fatigue that a unified ecosystem would normally eliminate.

A disabled user should not have to choose between a device they can actually operate and a workflow that integrates smoothly. The tech industry needs to move beyond walled gardens. We need better cross-platform accessibility standards and true interoperability. Until companies prioritize open integration over locking users into a single brand, multiply-disabled people will be forced to keep piecing together our own fragmented solutions just to participate in the digital world.

I’m a Christian, a blind, autistic, chronically ill disability and technology writer, accessibility advocate, and technical generalist. I provide freelance accessibility, usability, and product feedback from the perspective of someone who relies on assistive technology every day. My work is driven by a desire to make technology more inclusive, practical, and humane. I treat accessibility not just as a technical checkbox, but as a reflection of care, dignity, and faith.

What I Do #

I write about the intersection of disability, technology, and faith. My work is grounded in lived experience as a multiply disabled person who relies on assistive technology every day. I’ve written about accessibility, privacy, chronic illness, long-term care, education barriers, and what it means to build a life when the systems around you weren’t designed for you.

My current focus includes:

• Disability Writing & Advocacy: Essays and articles about accessibility, chronic illness, neurodivergence, and the compounding effects of multiple disabilities. My work has appeared on this site and has been submitted to publications like Rooted in Rights.
• Accessibility & Usability Testing: Freelance feedback on websites, apps, games, developer tools, and technical workflows from the perspective of a multiply disabled assistive technology user.
• Game Development: I design and direct Everrealm, a screen-reader-first kingdom-building game built for blind and multiply disabled players.
• Theology & History: Exploring broader Christian history and Gnosticism. I value spiritual exploration that looks beyond narrow traditional frameworks to find deeper meaning and historical context.

Projects & Roles #

My work spans writing, advocacy, accessibility testing, and game development:

• lanie.work: I write essays and articles about disability, technology, accessibility, chronic illness, and faith. My writing focuses on the lived experience of being multiply disabled in systems that weren’t designed for complexity.
• Everrealm: I design and direct a screen-reader-first kingdom-building game built specifically for blind and multiply disabled players. I set the vision and direct AI-assisted implementation rather than coding hands-on.
• Apache Restoration & Design: I’m the IT Manager and Tech Support for my mother’s restoration business. I handle software evaluation, systems setup, and operational documentation to keep the business running smoothly.
• Accessibility, Usability, and Product Feedback: I provide freelance feedback on websites, apps, games, developer tools, and technical workflows. My focus is identifying where products break down for real disabled users, especially people with overlapping access needs.

My Philosophy #

I value slower, thoughtful problem-solving. In a world of high-velocity tech, I advocate for:

• Low Cognitive Load: Systems that are predictable and don’t overwhelm people’s nervous systems.
• Energy-Based Planning: Designing workflows that respect limited physical and cognitive energy.
• Keyboard-Centricity: Building and using tools that are fully accessible via screen readers (specifically NVDA) and keyboard navigation.

Home Base #

This site is my public home base. It’s intentionally small, updated selectively, and focused on clarity over volume. If you’re new here, Reading This Site explains how the site is organized, what I write about, and the boundaries I keep around this space.

I spend my free time writing, directing game development, loom knitting, and playing deep, text-based automation games like Trimps and Evolve.

I’m especially interested in how overlapping disabilities (blindness, neurodivergence, and chronic illness) interact with technology. My long-term goal is to support or build a nonprofit that recognizes these complexities rather than treating them in isolation.

If my work has been useful to you, support my work or book a usability testing session.

What Works: The Persistent Text Model #

I thrive in systems that are text-first and keyboard-centric. Information has to be persistent so I can process it at my own pace.

• Keyboard-First Interaction: I rely on standard screen reader navigation (NVDA) and command-line interfaces.
• Explicit State: I need coordinates and structure (e.g., “You are at 10, 20”) rather than relative directions.
• Query over Memory: I prefer systems where I can find information (Command Palettes, fzf, tldr, AI) rather than having to memorize a thousand unique shortcuts.
• Guided Interactivity: I learn by doing with immediate feedback. “Go build something” without structure doesn’t work; I need knowledge checks and guided practice.
• Step-by-Step Workflows: Breaking complex tasks into small, concrete steps respects my limited cognitive energy.

Physical & Ergonomic Constraints #

My hardware choices are driven by a need for stability, precision, and less physical fatigue.

• PC over Everything: The desktop PC is my primary tool. The tactile feedback of a physical keyboard and the precision of keyboard-driven navigation are irreplaceable.
• The Mobile Barrier: I use my iPhone only when I have to. Mobile interfaces are inherently spatial and ephemeral. Holding a device is physically fatiguing, and my coordination makes small touch targets difficult to hit.
• The “Large Screen” Fallacy: Devices like tablets or the Echo Show 15 are completely unusable for me. A larger screen often just creates more empty spatial “noise” and requires more expansive, fatiguing gestures without adding the tactile precision I need.
• Wearables: Small screens on smartwatches are a hard barrier. The tiny touch targets and requirements for multi-finger gestures are incompatible with my coordination and sensory needs.

What Doesn’t Work: The Ephemeral Barrier #

I struggle with systems that are “ephemeral” (information that appears once and vanishes) or require spatial processing.

• Audio-Heavy Systems: Audio is ephemeral. If I miss a sound or a voice cue, it’s gone. I can’t “reread” a sound. Text works better because I can process it as many times as I need.
• Spatial Navigation: Because of topographical agnosia, I can’t build mental maps of 2D or 3D spaces.
• Real-Time Reactions: My nervous system requires “slower, thoughtful problem-solving.” I can’t use systems that penalize me for taking time to think.
• Passive Learning: Watching videos or listening to lectures without hands-on interaction leads to zero retention for me.

Real-World Examples #

Programming & Tooling #

This is why I prefer VS Code and the CLI over mobile or web apps. The CLI is a persistent text stream I can query and manipulate. It’s also why I focus on Python and automation tools rather than frontend. It’s about logic and systems, not visual layouts.

Gaming & Interactive Media #

• Audiogames: Most “blind-accessible” games rely on directional audio and spatial awareness. For me, this is sensory overload and provides no persistent information.
• MUDs (Text Games): I love text-based worlds, but only if they offer coordinates or pathing (like EmpireMUD). If a game requires me to “Map the forest” in my head, it’s a hard barrier.
• Automation: I enjoy games like Trimps and Evolve because they are menu-driven and allow me to query the state of my systems at any time.

For Developers & Testers #

If you’re building a tool and want to know if it fits this model, ask yourself:

1. Can a user find every command without a manual?
2. Is the state of the app queryable via text at any time?
3. Does the user have as much time as they need to make a decision?
4. Is it fully functional via a standard keyboard? (Crucial for avoiding the fatigue of touch/spatial interfaces.)

Professional Usability Testing #

I work as a Freelance Accessibility Specialist and Usability Tester. My work includes identifying barriers that automated tools often miss, especially where multiple disabilities overlap.

My testing focus includes:

• Screen Reader Logic: Deep testing with NVDA (primary), JAWS, and VoiceOver.
• Non-Visual Navigation: Ensuring complex web apps and CLI tools are fully keyboard-navigable.
• Cognitive Load & Sensory Design: Evaluating if interfaces are predictable and respect user energy and focus.
• Gaming Accessibility: Testing incremental and text-based games for screen reader compatibility and “low-pressure” playability.

Disability Writing & Advocacy #

My primary work is writing about the intersection of disability, technology, and faith. I’ve published essays on accessibility, privacy, chronic illness, long-term care, education barriers, and the compounding effects of multiple disabilities. My writing draws on lived experience as a blind, autistic, chronically ill person navigating systems that weren’t designed for complexity.

I’ve submitted work to publications like Rooted in Rights and write regularly for this site across Technology, Advocacy, Gaming, Faith, and Education categories.

Game Development: Everrealm #

I design and direct Everrealm, a screen-reader-first kingdom-building game built for blind and multiply disabled players. I set the creative and accessibility vision, design game mechanics, and direct AI-assisted implementation rather than coding hands-on. The game is in active development with regular releases.

Technical Background #

My technical skills were built through self-paced learning, including Python, Linux systems, and CLI-driven workflows. While I no longer code hands-on, this foundation informs my accessibility testing, my writing about technology, and my ability to direct AI-assisted development.

• Programming background: Python fundamentals, object-oriented and functional programming, version control with Git, and command-line application development. Built through platforms including Boot.dev, Codecademy, and Exercism.
• Linux & Tooling: Proficient with openSUSE on WSL, CLI-driven workflows, and tools like uv for package management.
• Accessibility Testing Tools: NVDA (primary), JAWS, VoiceOver, and keyboard-driven testing across web, CLI, and game environments.

Operational IT Support #

I serve as the IT Manager for Apache Restoration & Design. This isn’t just “fixing computers.” It’s about evaluating software, creating accessible operational documentation, and keeping business systems functional for non-technical users.

Community & Advocacy #

My work also includes peer support and writing about the intersection of faith, technology, and disability rights. I believe good technology should be an act of care, not just a feat of engineering.

Find Me Online #

• GitHub: RareBird15 – My repositories, including Everrealm and this site.
• lanie.work – My writing and advocacy.

Featured Projects #

Everrealm #

Everrealm is a screen-reader-first kingdom-building game designed for blind and multiply disabled players. I direct the game’s design, accessibility vision, and development roadmap, working with AI-assisted implementation to build mechanics that prioritize nonvisual access, low cognitive load, and keyboard-centric play.

The game is in active development with regular releases on GitHub.

• Everrealm on GitHub – Explore the game, contribute, or follow development.

Content Note: This narrative discusses medical trauma and institutional harm.

Preface #

This is a personal narrative about my experience as a blind, multiply disabled student in a residential school setting. It reflects my lived experience and my understanding as an adult, informed by later medical and psychological evaluations.

This account isn’t intended as an attack on individual staff members. It’s an account of systemic failure, medical misattribution, and institutional decision-making, and of the long-term impact those failures have had on my health, functioning, and sense of safety.

I’m sharing this because these patterns matter, not just for understanding my own life, but because they may still affect other students.

Early Experiences and Context #

I’m blind and grew up in a rural area with limited access to specialized services. Beginning around age six, I attended summer programs at the Texas School for the Blind and Visually Impaired (TSBVI). These programs weren’t primarily about instruction for me; I received Braille education and other blindness-related training at home.

The summer programs mattered because they provided something else: community. I was around other blind children, in an environment where my blindness was understood and unremarkable. Those experiences were largely positive and didn’t cause harm.

I began attending TSBVI as a full-time residential student for high school at age fourteen.

High School: Early Stability #

For the first couple of years of high school, my experience at TSBVI was mostly positive. I lived in a dorm with other students, had structure, and wasn’t yet being pushed hard toward adult transition goals or independence benchmarks.

At times, expectations felt high or overly rigid, but there were buffers: peer support, routine, and a contained environment. I was able to function within this structure, and I did well academically.

At this stage, my needs were consistently framed as blindness-related. Neither I nor my family were given reason to believe that anything else was going on.

Medical Harm and Misattribution #

When I was sixteen, I experienced severe head and eye pain. This was initially ignored and later misdiagnosed as glaucoma once the pain could no longer be dismissed. In reality, I was experiencing idiopathic intracranial hypertension (IIH), a neurological condition.

Because of the misdiagnosis and the intensity of the pain, light sensitivity, and vision changes from one day to the next, I ultimately had my eye surgically removed. After I healed, I returned to school under the assumption, shared by staff, that the medical problem had been resolved.

It wasn’t.

The underlying neurological condition was never properly identified or treated. From that point forward, ongoing pain, neurological symptoms, and reduced tolerance for stress and demand were consistently interpreted as psychological, behavioral, or blindness-related issues.

Transition Pressure and Collapse #

At eighteen, I was placed into the EXIT (Experiences in Transition) program. This was the same year I underwent what I believed at the time was a comprehensive autism evaluation. I was diagnosed with PDD-NOS (now referred to as Autism Spectrum Disorder) and the school claimed they had done a full assessment of my needs.

The transition program dramatically increased demands related to independence, self-direction, and performance, while reducing supports. I repeatedly communicated that the expectations were too much and that I was struggling physically and cognitively.

My body began to collapse under the strain. I developed symptoms consistent with fibromyalgia and severe nervous system overload. Instead of slowing down, reassessing medically, or increasing support, pressure continued.

The evaluation done that year didn’t include a comprehensive neuropsychological assessment. I later learned that the diagnosis given to me (PDD-NOS) functioned largely as a catch-all. It was treated differently, and with fewer supports, than a full autism diagnosis. The testing approach also mixed child and adult instruments in a way that later evaluators have told me was inappropriate. Neuropsychology should have been involved earlier. This helps explain why many of my needs were missed. As a result, I’ve been unable to access appropriate supports. I’m now seeking a full reevaluation.

Despite this, the school treated my difficulties as failures of coping or compliance rather than signs of serious neurological and developmental mismatch.

Withdrawal of Support and Punitive Actions #

After I could no longer meet the EXIT program’s demands, I was sent home with no meaningful support in place.

In addition to being removed from the program:

• My valedictorian status was taken away.
• An assistive technology device (a BrailleNote Apex) that had been provided to me was taken back.
• Scholarships were withdrawn.
• I was nearly prevented from returning to walk at graduation; my mother had to fight for me to be allowed to do so the following year.

These actions happened even though the evaluation conducted at the time recommended more support, not less.

The message I received was clear: once I could no longer perform independence as the school defined it, I was no longer worthy of recognition, resources, or care.

What Was Missed #

I was diagnosed as a baby with optic nerve hypoplasia. I didn’t learn until adulthood that this diagnosis is commonly associated with septo-optic dysplasia, a condition that warrants neurological and endocrinological evaluation and monitoring.

None of this was pursued when I was a child. Neurology and endocrinology were never meaningfully involved. Everything was assumed to be blindness-related. I was my parents’ first child, so I don’t blame them for not knowing better, but the medical system also failed me.

Only in my thirties did I begin to understand that many of my lifelong difficulties, including executive dysfunction, fatigue, stress intolerance, and neurological symptoms, were likely not character flaws, motivational failures, or psychological resistance, but the predictable result of untreated neurological and developmental conditions compounded by institutional trauma.

Long-Term Impact #

I’m now thirty-four years old. It’s 2026.

I continue to struggle with severe executive dysfunction and task initiation. Efforts toward independence are often met not with empowerment, but with shutdown, because my nervous system learned, repeatedly, that trying harder led to pain, punishment, and loss.

This isn’t a failure to apply tools or strategies. It’s the long-term impact of being pushed beyond capacity, disbelieved, and abandoned at a critical developmental stage.

Why I’m Sharing This #

I’m not sharing this to relive the past or to assign individual blame.

I’m sharing it because I’m concerned the same framing may still be causing harm: treating blindness as a single-axis explanation and prioritizing independence without enough attention to multiple disabilities, neurological safety, or trauma.

If this happened to me, it may be happening to others.

I believe that blind, multiply disabled students deserve environments that prioritize safety, accurate medical understanding, and definitions of success that include interdependence and support, not punishment for collapse.

This is my story. I’m still living with its consequences. It doesn’t need to be this way for others.

As someone with multiple disabilities, including total blindness, neurodivergence, and chronic health conditions, I’ve found that traditional education often fails to accommodate my learning needs. I’ve attempted college online four times and community college once in person. Each attempt came with major barriers that made it hard to succeed.

Barriers included rigid schedules, campuses that required physical navigation and mental mapping, fixed expectations around learning styles, a lack of understanding from educators on how to support diverse needs, and financial aid that was only available if I attended at least half-time. Those obstacles made it clear I needed a different approach to learning, one that actually fit my abilities and circumstances. That’s what pushed me toward self-paced education.

This is a long-form essay that explores self-paced education, systemic barriers in traditional and online learning, financial constraints, and a vision for more inclusive educational models for multiply disabled learners.

What “Self-Paced” Really Means #

Many people think self-paced education just means learning at your own speed. That’s part of it, but real self-paced education is bigger than that. It gives you freedom to choose when, where, and how you learn. It means being able to pick resources and methods that fit your actual needs.

For me, this means using a mix of tools and strategies: online courses with flexible deadlines, interactive projects, and assistive technology that works with my blindness and neurodivergence. That includes screen readers and AI tools, which are often treated as a gray area in traditional institutions. Self-paced education also lets me take breaks when I need to, which is crucial for managing chronic health conditions. Ultimately, it’s about building a learning environment that’s adaptable and responsive instead of forcing the learner to conform to a rigid system.

Another key part is finding your own way to learn instead of being confined to a single method that may not suit you. Throughout my attempts at traditional education, I was often expected to learn in ways that didn’t work for me, like taking linear notes or keeping up with synchronous online discussions my health made hard to maintain. Self-paced education has given me room to explore different learning styles and find what works best for me, whether that’s hands-on projects, untimed quizzes, or text-based materials.

Traditional education systems often teach in a one-size-fits-all manner, which can be particularly challenging for students with disabilities. Self-paced education allows for a more personalized approach, enabling learners to customize their educational experiences based on their individual strengths and needs.

People with multiple disabilities often need to pause, sometimes for days, weeks, or longer, to recover from health setbacks. Self-paced education accommodates this need, allowing learners to take the time they require without the pressure of falling behind peers. This flexibility is essential for maintaining both physical and mental well-being while pursuing educational goals.

Learning While Multiply Disabled #

Learning while multiply disabled isn’t simply the sum of several separate challenges. Disabilities interact with one another in ways that compound difficulty and unpredictability. An accommodation that supports one disability may worsen the impact of another, and systems designed with a single access need in mind often fail when multiple needs are present at the same time. For example, tools that rely heavily on video may exclude blind learners, while fast-paced, discussion-heavy environments can overwhelm neurodivergent learners or those with limited cognitive energy. When chronic illness is added to the mix, the ability to participate consistently becomes even more fragile.

One of the most significant barriers multiply disabled learners face is variability. Energy, cognition, pain levels, and sensory tolerance can fluctuate daily or even hourly. Traditional education models tend to treat inconsistency as a lack of effort or commitment, rather than as a natural consequence of disability. Deadlines, attendance requirements, and rigid pacing leave little room for these fluctuations, forcing learners to choose between their health and their education. Over time, this creates burnout, discouragement, and the false belief that learning itself is the problem.

Another challenge is that much of education assumes a narrow definition of engagement. Participation is often measured by visible activity: logging in at specific times, speaking in discussions, watching videos in full, or progressing through material at a predetermined rate. For multiply disabled learners, meaningful engagement may look very different. It may involve reading transcripts instead of watching videos, revisiting material multiple times, learning in short bursts, or stepping away entirely during health setbacks. These forms of engagement are no less valid, but they are rarely recognized or supported in traditional settings.

The barrier for multiply disabled learners is rarely a lack of ability or motivation. What we lack is educational infrastructure designed for lives marked by complexity, uncertainty, and limited reserves. Self-paced education acknowledges this reality. It creates space for learners to engage when they are able, to pause when they must, and to return without penalty or shame. For multiply disabled people, this isn’t a luxury or a preference. It’s often the difference between being able to learn at all and being forced to give up.

Why Traditional Education Models Fall Short #

Conventional education programs are often built around rigid structures that don’t accommodate diverse needs. These models typically require students to follow fixed schedules, attend classes in person or at specific times, and complete assignments within strict deadlines. That inflexibility creates major barriers for students who need health breaks, alternative learning methods, or more processing time.

Traditional education also leans on one-size-fits-all assessments, which disadvantage students who don’t fit the standard mold. For example, students with disabilities may struggle with standardized tests or group projects that ignore their needs. A lack of understanding and support from educators can lead to real isolation and frustration.

Even online education, which is often touted as more accessible, can still fall short. Many online programs maintain rigid deadlines, require synchronous participation, or rely heavily on multimedia content that may not be accessible. When I attended college online, I was given extensions on all assignments except for discussion posts, which were a significant part of the grade.

When I asked disability services about this, I was told discussion posts were considered “participation” and therefore not eligible for extensions. I had some instructors who were kind enough to give me extensions anyway, but this often left me behind the next week and struggling to catch up. In the end, I had to withdraw from the courses because I simply couldn’t maintain the pace while managing my health, and trying to do so was making me physically sicker.

In traditional education settings, you also have to prove your disability repeatedly to access accommodations. This process is exhausting and retraumatizing, especially for people with invisible or fluctuating disabilities. Each new course or semester requires fresh documentation and justification, creating a major administrative burden. This constant need to validate your disability pulls energy away from learning and worsens feelings of alienation. It adds another barrier instead of improving access.

Financial Barriers and the Cost of Inflexibility #

Financial barriers are also a huge part of what blocks multiply disabled learners. Many financial aid programs require students to attend at least half-time to qualify for assistance. This requirement is especially hard for students with multiple disabilities, who may need reduced course loads or to step away entirely to manage their health. The pressure to maintain a certain enrollment status increases stress and worsens health issues, which then hurts academic success.

Even disability-specific financial aid can come with restrictions that make it hard to access. For example, a scholarship designed for students with disabilities may require full-time enrollment or consistent attendance, which may not be feasible. These limits create a catch-22: students can’t access the support they need because of the same barriers they’re already dealing with in school. I’ve lived this. I often pushed myself to take more classes than I could handle just to keep my financial aid, which led to worse health and academic setbacks.

There are vocational rehabilitation programs designed to help people with disabilities get training for in-demand jobs. However, these programs often have strict requirements and limited funding. I’ve had to walk away from vocational rehabilitation services multiple times because they failed to consider all of my disabilities, spoke down to me, or insisted I could only receive help if I attended a state college full-time, an impossible requirement for me.

What Has Helped Me Learn Anyway #

Even with all the barriers I’ve faced in traditional settings, I’ve found ways to keep learning. Self-paced education has been the biggest reason I could keep going. By choosing courses and programs with flexibility in scheduling and pacing, I’ve been able to shape my learning around my needs.

I now learn using a combination of platforms like Codecademy and Exercism, while mastering my own systems with openSUSE on WSL, Python, and CLI-driven workflows. I’m also exploring broader Christian history and Gnosticism at my own pace. These resources let me learn, take breaks when needed, and revisit material as often as necessary. I’ve also found that project-based learning and hands-on work help me retain information far better than lecture-based methods.

Another strategy that has helped me is giving myself permission not to take notes, something I struggled with in traditional settings. I used to feel pressured to take detailed notes during lectures or readings, which often led to cognitive overload and fatigue. Now, I focus on understanding the material during my initial exposure and rely on revisiting the content later if needed.

Notes pose several challenges for me as a blind, neurodivergent learner. Typing notes can be time-consuming and distracting, taking my focus away from understanding the content. I used to spend more time trying to summarize and organize my notes than actually learning. Also, reviewing notes later can be overwhelming; I often find myself getting lost in my own documents, making it difficult to extract key information. By letting go of the expectation to take notes, I’ve been able to focus purely on comprehension and retention.

Finally, AI tools have changed my learning process. These tools help me generate summaries, explain complex concepts, and provide alternate explanations when I struggle to grasp a topic. AI has become a useful resource, helping me work around barriers traditional methods couldn’t address.

The Value of Self-Paced Education #

Self-paced education has been a game-changer for me. It gives me the flexibility and autonomy I need to handle my specific barriers. By letting me learn at my own pace, take breaks when necessary, and choose methods that work for me, self-paced education has helped me take control of my learning. This approach has improved my academic progress and boosted my confidence and motivation.

However, charting your own educational path comes with real hurdles. It requires a lot of self-discipline and time-management skills, which can be difficult to maintain during health fluctuations. Also, the lack of structured interaction with peers and instructors can lead to feelings of isolation.

Another invisible burden of self-paced learning is the complete absence of a disability services office. In traditional settings, there’s at least a framework on paper for requesting accommodations. In self-directed learning, if a course, platform, or tool is inaccessible, the responsibility falls entirely on the learner. I’m left to either engineer my own accessibility workarounds or abandon the resource and find an alternative. This constant need to self-advocate and troubleshoot drains the very energy reserves that self-paced learning is meant to protect.

Despite these hurdles, the benefits still outweigh the drawbacks for learners like me. Self-paced education offers personalization that traditional models simply can’t provide. Unfortunately, it’s often viewed as less legitimate by employers and society at large. This stigma results in fewer student resources, discounts, and financial aid options, alongside less recognition for the credentials earned.

A Vision for Something Better #

While self-paced education has been central to my journey, there’s still a lot of work to do to create a truly inclusive educational landscape. I envision a future where educational institutions and programs are designed with flexibility and accessibility at their core, rather than as afterthoughts. This includes offering a variety of learning formats, assessment methods, and support services tailored to diverse needs.

I also hope to see greater recognition of self-paced education by employers and society, which would help reduce stigma and improve access to resources for people on non-traditional paths. By advocating for systemic changes and building awareness, we can create an environment that actually supports people in reaching their potential.

That same inclusivity must extend to how financial support is structured. I envision scholarships and financial aid models that don’t require full-time or even half-time enrollment to be considered valid. Learning shouldn’t be contingent on a student’s ability to maintain a specific pace, especially when that pace may be incompatible with their health or disabilities. Financial support should recognize intent, effort, and persistence over time, rather than enforcing rigid enrollment thresholds. When funding accommodates reduced course loads, pauses, and nonlinear progress, more learners are able to continue sustainably instead of being forced out by systems that equate speed with seriousness.

Closing Thoughts #

Navigating education as a multiply disabled learner is deeply complex. Because traditional models have so often failed to accommodate my needs, I’ve fully embraced self-paced learning. Through this model, I’ve been able to build an educational experience that aligns with my abilities and circumstances.

While this autonomous approach takes significant effort to maintain, it offers a level of flexibility that traditional models can’t match. As we look to the future, it’s essential to advocate for inclusive and accessible systems that recognize and support diverse learner needs. By doing so, we can create a more equitable educational landscape for everyone. This isn’t about doing more or moving faster. It’s about making learning possible, sustainable, and humane.

As a blind, neurodivergent, and chronically ill woman, finding games I can actually play and enjoy has become increasingly difficult. This post is for other disabled gamers, accessibility advocates, and developers who want to understand what accessibility looks like in practice, not just in theory.

Why Accessibility Is More than Screen Readers #

Accessibility isn’t just about adding text-to-speech or ARIA labels. For a multiply disabled player, it’s about the overlap of:

• Cognitive Load: Can I process the information without sensory overwhelm?
• Pace and Pressure: Does the game penalize me for my reaction time or fatigue?
• Information Persistence: Is the data available as text I can reread, or is it audio that vanishes once played?

The Games That Work for Me #

My current gaming rotation is small and intentional. I favor systems that behave like structured documents rather than spatial environments.

Incremental and Idle Games #

Games like Trimps and Evolve are my “gold standard.” They work because they:

• Have no “fail states” based on speed.
• Are entirely menu-driven, making them highly predictable for NVDA.
• Allow for deep optimization and planning without the need for visual maps or graphs.

MUDs (Multi-User Dungeons) #

I enjoy the concept of MUDs, but they’re often exhausting in practice. Because I have topographical agnosia, room-based navigation is a major barrier. Unless a MUD provides explicit coordinates or a dirs command to show me exactly where to go, I spend more energy trying not to get lost than I do playing the game.

What Makes a Game Accessible for Me #

A game can be “technically” accessible (meaning my screen reader can see the buttons) and still be unplayable if it overwhelms my nervous system. Features that consistently matter:

• Untimed Gameplay: The freedom to walk away or think for ten minutes without being penalized.
• Minimal Audio Clutter: The ability to mute background layers while keeping essential feedback.
• Keyboard-Only Interaction: No reliance on “Canvas” or mouse-coordinate-based clicking.
• Persistent Text: The ability to scroll back through a buffer to re-read what just happened.

Why Finding New Games Is a Struggle #

Many games recommended for “blind players” rely heavily on audio navigation or spatial awareness. For my neurodivergent profile, directional audio is often just sensory noise. It doesn’t help me build a mental map.

On the indie side, many developers use Unity or WebGL without exposing the UI to the accessibility tree. I’ve lost count of how many times I’ve bought a game only to discover that every button is an unlabeled “Canvas” element that my screen reader ignores.

Final Thoughts #

Gaming is still deeply meaningful to me, but only when developers recognize that accessibility isn’t one-size-fits-all. For multiply disabled players, accessibility means flexibility, respect for energy limits, and the freedom to play slowly and on our own terms.

Because I manage my life and work using energy-based planning, I’m selective about my commitments and may take a few days to respond. I value clear, direct, thoughtful communication.

Where to Find Me #

For all my social profiles, community links, and where to find me online, visit the Connect page.

If you want to reach me directly, email is best: lanie@lanie.work.

Communication Preferences #

To respect my cognitive load and access needs:

If you’re reaching out because of something I wrote, please read Reading This Site first. It explains how I label topics, why this site does not have comments, and what kind of contact is welcome.

1. Text over Voice: I don’t do well with voice calls or “ephemeral” audio. Please send a text-based message so I can process it at my own pace.
2. Explicit Context: When reaching out, please be clear about your intent. “Query over memory” applies here too. I appreciate subject lines that tell me exactly what the message is about.
3. Accessibility First: If you’re reaching out for feedback on a project, please include a link to your project or documentation so I can evaluate whether it fits my interaction model.

Reporting Accessibility Issues #

If you’re reporting an accessibility issue on this site, these details help me fix it faster:

1. Page URL: The exact page where the issue happened.
2. Device and browser: For example, iPhone + Safari, Android + Chrome, Windows + Edge.
3. Zoom or magnification level: If relevant.
4. What happened: What was hard to use or confusing.
5. What you expected instead: What outcome would have made it work better.

Send a Message #

If the form below doesn’t load or submit, or if Turnstile is blocking you, email me directly at lanie@lanie.work. That inbox is here as an accessibility fallback when the form isn’t usable.

Thank you for respecting my time and energy.