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The following article was published in our article directory on July 14, 2014.
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Visible and Invisible Disabilities: On Being a Reluctant Ambassador

Article Category: Education

Author Name: Lucas Steuber

I have a disability. It's kind of a silly one. Are you ready?

I'm colorblind.

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, and I haven't tried the relatively new prosthetics designed to assist me with color recognition (although I'd love to test these out). I use strategies based on my knowledge of the world that I've learned via other means. 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). My delayed responses are alternately studied and applauded by my colleagues (as all of us work with children with disabilities know, we celebrate every small success!).

However, 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 probably just memorized the shapes of the letters in the same way as a three year old might identify the ideogram for "McDonald's" without really being able to read the word.

My relatively insignificant disability is generally 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 are all different!" This is my of 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.

We recently wrote a post about "Theory of Mind" among those with Autism Spectrum Disorder (essentially the idea of being able to see the world through others' eyes), and one commenter – an adult with Autism – shared a very interesting view. He said that he "would like to say that theory of mind is not something we notice in neurotypicals well. 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 ability possessed by the majority seems to represent the fundamental definition of disability. If you're not like most people, something's wrong.

At Portland LanguageLab we are painfully familiar with the concept of neurodiversity and the prevalent societal views of what is considered neurotypical. 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.

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? Will an individual with "disordered" theory of mind become a preferred reproductive partner? Then what?

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. Our use of patterns lets us process complex concepts at lightning speed.

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?

I'll be thinking about these questions for the rest of my life. 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. I spent several years working on research in the field of Schizophrenia, and I remember speaking with someone who said "I just wish people could see that there's something wrong – maybe then they wouldn't just think that I'm crazy."

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? I know that colorblindness is a difference in only one element of sensory responses 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 (although I have ADHD too, which is another essay altogether). I use this example as a way of illustrating a point about our societal assumptions of shared perceptions. 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.

Keywords: autism ASD autism spectrum disorder speech pathology speech therapy disability disabilities colorblindness

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