Achromatopsia: Seeing Without Color

I want to tell you more about the visual condition I hint at throughout this site.

This work is personal. To understand what happened when my mind met artificial intelligence, it helps to understand the mind that entered that encounter — how it learned, what it trusted, and how it had spent a lifetime reaching information it could not access directly.

My disability shaped my relationship with language. Language shaped the lawyer I became. Law shaped how I gathered evidence and tested competing explanations. And all of it shaped the way I encountered machines built almost entirely from words.

So before I ask you to consider what artificial intelligence can do to human perception, I want to tell you something about mine.

I was born with achromatopsia.

When people hear "colorblindness," they usually picture someone mixing up red and green. That is not my experience. I do not see faded color. I do not see muted color. Mostly, I see none at all.

I say "mostly" because perception is rarely as tidy as a diagnosis. In ideal light, I sometimes think I detect hints of yellow or orange. I can occasionally match color swatches when lighting, contrast, and context align perfectly.

But I have no internal reference point for what color is supposed to feel like.

No memory of red. No private definition of blue. No way to compare what I perceive with what you mean when you say yellow.

I think I see something. I just cannot be certain what that something is.

That uncertainty is part of the condition too.

My world is built from light, shadow, contrast, texture, movement, context, and language. Visual acuity, light sensitivity, and daily function vary widely among people with achromatopsia. This particular version of it has shaped how I learned, how I read rooms, how I evaluate evidence, how I practice law, and how I parent.

Achromatopsia is not a colorful little footnote in my biography.

Pun unfortunately intended.

It sits beneath what I call the Full Color Method: a practice of widening the record and asking what becomes visible when no single perspective is mistaken for the whole truth.

This essay is about the distance between one person's lived reality and what everyone else assumes they can see. I call that distance the perception gap.

Clinically, achromatopsia affects the cone photoreceptors responsible for color vision, sharp detail, and daylight function. In my case, that system does not function normally, so my vision relies much more heavily on rods, which work better in low light but do not provide ordinary color vision.

That creates the central contradiction: I receive far less visual information, yet brightness can overwhelm me.

• Absent or severely limited color vision
• Severe photophobia (extreme sensitivity to light and glare)
• Reduced visual acuity (less sharp or detailed vision)
• Nystagmus (involuntary movement of the eyes)
• Difficulty recognizing faces or fine details at a distance

The condition is usually caused by inherited variants in genes such as CNGA3 and CNGB3. No one else in my family has it.

Small piece of trivia, if you are interested: Pingelap, an atoll in Micronesia, is sometimes called the Island of the Colorblind because achromatopsia became unusually common there after generations of geographic isolation.

I remember finding that strangely comforting. Somewhere, there was a place where people like me were not quite so rare.

My diagnosis came before my own memory of it. I know my parents took me to specialists at Duke and the University of Virginia before they had an answer. They kept looking until they found one.

Then, because they did not yet know what my future vision would be, they had me taught Braille as a precaution.

While the other children went to gym, I sometimes went to Braille class. I hated that. Not because Braille lacked value. It is essential for many people.

I hated it because I wanted to be where everyone else was. I also remember almost none of it.

That was good parenting. It was not especially impressive scholarship.

The deeper lesson took longer: Accepting an accommodation is not the same thing as accepting defeat.

Disability is usually described by what a person cannot do. That is only the visible part.

The harder part is everything you can do — but only because you have spent years building another route.

The route takes planning. Translation. Extra steps. It requires thinking about things other people never have to notice.

It is exhausting. Eventually, the work becomes so practiced that other people stop seeing it. Sometimes you stop seeing it too.

The first translation I remember involved crayons. Thank God for whoever decided to print the color names on the side.

When the teacher said, "Use the blue crayon," everyone else looked. I read. I was not guessing. I was translating. I was reaching the same answer by another route.

Then came books. My elementary school books were enlarged until some were nearly two feet tall. My piano books were too.

Thank you, Mom.

She copied pages, found equipment, and kept adjusting the world until I could enter it. That is invisible labor too. The thing everyone else simply picks up may reach your hands only after someone has requested it, enlarged it, copied it, reformatted it, transported it, and explained why you need it.

Access looks effortless only when the work behind it remains invisible.

Color gave other children information instantly. I learned to ask for different information. What shape is it? Where is it? Is it lighter or darker than the thing beside it? What texture does it have?

I built other habits: attention to pattern, reliance on context, comfort with asking questions, and a fairly permanent unwillingness to accept "it is obvious" as a complete explanation.

Language became one of my earliest accommodations. Eventually, it became much more than that.

The light is harder to explain than the color.

You know the flinch when you leave a dark theater and step into full sun? For a moment, the brightness erases the edges of everything. Then your eyes adjust.

Mine do not. That is just outside. All day.

Tinted lenses help me tolerate light, but they do not give me color.

Which is why, when someone asks about "colorblind glasses" — the ones in viral videos where someone gasps, cries, and sees color for the first time — the answer is no.

Those glasses separate color signals that are already present but overlapping. That can help with certain forms of red-green color-vision deficiency.

My problem is not that the signals are standing too close together. The underlying system is not functioning normally.

A lens can filter light. It can reduce glare. It can change contrast. It cannot build a color-vision system where one is absent.

So no, I will not suddenly see the apparently magnificent institution known as purple. I hear it is lovely. I remain unable to verify that testimony.

As I got older, the accommodations became less visible. The translation did not.

Most people notice nothing until they catch me holding a book inches from my face or reaching for sunglasses indoors — in a grocery store, during a deposition, or occasionally at counsel table in open court.

There is nothing quite like trying to project professional authority while wearing sunglasses. It says prepared legal advocate with a faint undertone of celebrity declining comment.

I do not always catch what your face is doing either — a raised eyebrow, a tightened jaw, the look that means, We will discuss this later. Past even a moderate distance, I may not see it at all.

And God, curbs. I have sacrificed more heels to poorly perceived curbs than I am willing to admit into the public record.

None of this necessarily reads as disability from across the room. It may read as clumsiness. Intensity. Aloofness. Odd behavior.

That is the perception gap: the space between the reality inside my body and the story another person constructs from what they can observe.

People treat their own access to the world as ordinary and complete. It rarely is.

I do not drive.

For me, a stop sign has to compete with everything behind it. At the wrong hour, it loses. Brake lights may register a fraction of a second too late, and sometimes a fraction of a second is the whole problem.

I am not willing to bet someone's life on my depth perception or my uncertain relationship with red. So I do not drive.

That decision shapes where I live, how I work, how I parent, how I schedule, and how much invisible planning sits behind an ordinary day.

The task is usually possible. The infrastructure around the task is exhausting.

You may be perfectly capable of attending the meeting, appearing in court, taking your child to an appointment, working late, or going to dinner. But first you have to solve the transportation problem. Then the timing problem. Then the return-trip problem. Then the problem created when the first three problems change.

People see the barrier. They do not see the calculations. They see the accommodation. They do not see the work required to obtain it. They see that you arrived. They do not see what it took to get there.

That is what people often miss when they think about disability. It changes even the things you can do.

The instinct started with a crayon wrapper. By the time I entered a courtroom, I had already spent years gathering information through other people's words.

Language had become my color. That is not a metaphor I invented as an adult to make disability sound literary. It is how I learned to move through the world.

Other people described what they saw, and I compared their descriptions against everything else I knew. I looked for consistency, context, omission, and contradiction. Words functioned as evidence before I knew what evidence was.

Eventually, that instinct became legal training. I became a prosecutor and then a trial lawyer. I built cases from testimony and asked juries to understand harms they had never personally witnessed.

There is some irony in reading juries I cannot fully see. I cannot always tell whether the juror in the back row believes the witness or is approximately three minutes from sleep. So I learned to rely on the whole record. Tone. Pacing. Word choice. Breathing. Silence. The shift in a room when something lands.

The courtroom rewards careful translation. So does disability. I had a head start.

Living without color taught me that perception is rarely as complete as it feels.

When someone points confidently at something "self-evident," I have learned to ask: How do you know? What are you relying on? What information are you receiving that I am not? What might I be receiving that you are not? What assumptions are hiding beneath the obvious?

Those questions extend far beyond disability. They appear in pain. Trauma. Mental illness. Grief. Cognitive injury. And eventually, artificial intelligence.

Over time, this became the Full Color Method. Its premise is simple: No single perspective holds the whole record.

A legal account may establish causation while missing lived experience. A clinical account may describe symptoms while missing product architecture. A technical account may explain system behavior while omitting what the encounter felt like. Each may be accurate. None is necessarily complete.

The method asks what remains invisible, whose account gets treated as objective, and what changes when the legal, clinical, technical, and lived records sit beside one another.

Full color does not mean treating every claim as equally true. It means building a record wide enough for responsible judgment.

Language had always bridged the distance between what I could perceive and what everyone around me saw without trying.

The crayon wrapper. The enlarged page. The testimony carried into a courtroom.

Then I encountered machines built almost entirely from language. The bridge started answering back. Instantly. Confidently. Personally. Without fatigue. Without discomfort. Without the ordinary human friction that sometimes protects us from our own certainty.

The medium I trusted most became both mirror and amplifier.

That is why A Trial of Color is not a memoir about blindness. It is an inquiry into human judgment — how we widen the frame, separate evidence from interpretation, and restore the perspectives fluent certainty tends to push aside.

Color is not decorative in the title. It is the structure of the question.

Not exactly.

Online simulations often desaturate a photograph and call it an approximation. That may offer a rough intuition, but it is not my experience.

A simulation cannot reproduce the glare. The missing facial detail. The nystagmus. The mental habits built over a lifetime of translation. Nor can it capture the quiet knowledge that everyone around you is receiving information you cannot access while remaining entirely unaware that anything has been withheld.

A simulation can show you an image without color. It cannot show you my perception.

I would rather describe it imperfectly than offer something visually neat and conceptually false.

For most of my life, I have depended on other people to describe colors I may never see.

That taught me that we are constantly asked to judge realities we cannot personally access.

A juror cannot feel another person's pain. A clinician cannot inhabit a patient's mind. A reader cannot enter the moment being described.

We rely on testimony. We compare it with other evidence. We test competing explanations.

That is how the perception gap gets crossed. Imperfectly. Carefully. Humanly.

It has always been the work of a courtroom. And, long before I had a name for it, it was the work of my life.