Visible and Invisible Disabilities: On Being A Reluctant Ambassador

I have a disability. It’s kind of a silly one. Are you ready? I’m colorblind. 

 There's a number there? A letter? Yep, can't see it.

There's a number there? A letter? Yep, can't see it.

Specifically, I have an M-Cone Reduction Deuteranomaly, which about 1.2 percent of men have and 0.02% of women. The gender difference is because the genetic disorder is on the X chromosome; women have two of them, which means it’s likely that one of the chromosomes has the “correct” gene.

I said above that colorblindness is a “silly” disability – and relative to most, it really is. However it is a disability in that it prevents me from doing some things that people with normal color vision can do. It dashed my dreams of being a pilot after about ten hours of flight lessons because commercial airlines don’t hire colorblind pilots. My general fear of being strapped to an explosion that catapults me through the air at fatal velocity might have also impaired my eventual ability to be a pilot, but that’s a different story. Colorblindness also impairs my ability to match my tie to my suit, my ability to compliment my wife’s dresses in the expected way, and I’m pretty well convinced that you’ve all invented the idea of “purple” as an elaborate prank.

Colorblindness is a permanent disability. There are no medications to treat it, no visual therapies to address it, although i admit I haven’t tried the relatively new prosthetics designed to assist me with color recognition (I'm afraid they'd scramble my mind). Instead, I employ use strategies based on my knowledge of the world that I’ve learned to inform my guesses over time. For example, when looking at a picture depicting a sequence of colors, the first of which I can recognize as a form of red, I make an educated guess that the next color will follow in the pattern reported to be found in a rainbow (even though I can’t really tell the difference).

In describing myself to others, it is not the first thing I mention. I don’t greet people by saying, “It’s nice to meet you. I’m colorblind.” It’s a part of me, but it’s a small part of my identity in the vast constellation of features that make me who I am. In fact, like many disabilities, there might be a bit of a silver lining: My mother claims that I learned to read at such a young age because I couldn’t use color as a means to differentiate crayons for art activities in kindergarten. Really I'm sure I just memorized the shapes of the letters in the same way as a three year old might identify the ideogram for “HappyMeal” without really being able to read the word, but it's a pleasant thought - although "high speed crayon reading" makes for a pretty low-rent superpower.

My relatively insignificant disability is invisible. No one looks at me and thinks “oh, there’s a colorblind person.” In fact, I could – and often do – pretend that I have normal vision. When asked about being colorblind, I often deflect the question by saying something like “I’m not different – maybe you're all the different ones!” This is my of (jokingly) questioning the inherent paradigm of what is typical, and it is born out of the experience of being a reluctant ambassador for all people who share my disability. All through primary school, and occasionally even now, any mention of my colorblindness was met with a string of questions like “What color is this? And this? How about this? Oh wow!” … which was amusing when I was six, and gave me some fun attention, but I’m more than a little bit tired of it. My experience, I assure you, palls in the light of the parents and individuals who must serve as reluctant ambassadors over and over again every single day for a difference or disability far more impactful than my own.

A few years ago I was speaking with an adult with Autism Spectrum Disorder and he shared a very interesting view. He said that "theory of mind is not something we notice in neurotypicals either. They all generally do not have empathy towards us, do not treat us as people who experience life as individuals, and they generally are not able or willing to accept that we find other things pleasant or unpleasant than they. In other words, neurotypicals are as Autistic as people with Autism when they interact with us.”

That’s a fascinating perspective, and it raises an interesting question: If 98.8% of the population saw colors as I do, then who would have the disability? If 95% of the world was on the Autism Spectrum, would emotional perspective-taking be seen as a disorder? Who gets to make those decisions? The opinion possessed by the majority seems to represent the fundamental definition of disability (among other things). If you’re not like everyone else, then something must be wrong. I’m colorblind, which means that I don’t see the world the same way as about 99% of all of you. My disorder might be “silly,” but it means that my sensory perceptions of everyday familiar objects are different from yours. They’re atypical, disordered, unexpected, and all of the other fancy words we use to describe clinically significant neurological conditions.

 "Who, me? Why I never!"

"Who, me? Why I never!"

But must we all be the same? Is society’s desire for a definition of normalcy a form of tyranny of the majority? Is it a residual primal and primitive instinct to trust sameness and be wary of differences, a form of xenophobia from prehistoric times requiring survival in an unfamiliar and hostile world? If the fight-or-flight response becomes unnecessary in an increasingly comfortable and accommodating world, will evolution begin to select populations that experience emotions less intensely? When a modern human hears a rustling in the bushes in the middle of the night, they - or at least I - tend to high tail it out of the backyard at maximum warp, even though there's a 99.999% chance it's wind and a .0001% chance it's a tiger. Which is the more logical response? Certainly it appears not to emotion.

My experience of my environment is my own. It is not the same as yours, and that’s okay. When we honor each person’s unique perspective, we see each person as an individual. As humans we seek to make patterns, to group, to sort, to separate and divide. This strategy may bring order to the chaos and unpredictability of the human condition. It allows us to make instantaneous decisions with what might appear to be minimal information.  Categorizing our thoughts based on past experiences allows us to process complex concepts at lightning speed, although the accuracy of our conclusions is highly dependent on the accurate perception of those past experiences.

Our minds are pattern-making machines, but the inherent divisive quality of our thought has disadvantages in interactions requiring acceptance and affiliation. Our need to categorize places some of us “in” and some of us “out.” What happens when you don’t fall into the category of typical, of normal, of accepted, of the same?

Again, my "disability" is hidden. I look like everyone else. As individuals on the Autism Spectrum know, there may be repercussions when people with invisible disabilities do not meet societal expectations - or when society enforces those expections upon them despite their disorder because they their appearance lacks immediate evidence, as with here, here, and here, two fatal shootings and one six-police offer tackle of children as young as six on the Autism Spectrum (and those are just the most recent I found in search). I spent several years working on research in the field of Schizoprenia, and I remember speaking with someone who said “I just wish people could see that there’s something wrong so they wouldn't judge.

I imagine that most would say I am a successful person, in spite of my colorblindness, but why do I even need to justify the concept of colorblindness as a hardship? Sure, an inability of rods and cones to interpret certain wavelengths of color is a difference in only one area of sensory response to environmental stimuli. It is not a pervasive disorder. I would not presume to equate it to Autism Spectrum Disorder or any other federally recognized disability category or medical diagnosis. I bring it up only as a foil to illustrate a point about our our society assumes that we perceive the world equivalently, while the truth is that when you have met one person, you have met one person.

Finally, when faced with social adversity as the result of your own differences, remember the words of Tyrion Lannister: “Wear it like armor and nobody can use it to hurt you.” You might say I’m colorblind – but all of you made up the color purple. So there.

Lucas Steuber, MA Applied Linguistics, MS CCC-SLP is the co-founder and CEO of SpeechScience as well serving as webmaster, coder, and writer and editor whenever possible. He also provides services in private practice as an AAC specialist and consultant in Portland, OR. He serves as the Director of Clinical Research and Development for Avaz Freespeech, which won Best of Show in CES ASIA in 2016. He regularly presents domestically and worldwide to speech pathologists and other related health professionals, in additional to writing extensively about language and social thinking in pervasive disorders such as Autism Spectrum Disorder as well as Augmentative and Alternative Communication (AAC). In addition, he serves as a board ambassador to the Autism Society of Oregon, sits on the Strategic Planning Committee of the Autism Society of America, and holds board positions with several local nonprofits. You are welcome to visit Lucas' website here or reach him at