“Red” Flower

As iPhone photos go, I’m actually pretty happy with this one:

Red flower

The red isn’t quite right1, which is something of an issue with the iPhone camera in my experience. But oddly it is far closer to the actual color2 than I was able to achieve when taking the same photo with my Nikon. It’s the first time I’ve run into this issue since I made the leap to a DSLR. I intend to tinker some and see if I can’t pinpoint how to better capture these pretty flowers in front of my house.

  1. Yes, I can actually tell that despite my colorblindness.
  2. I’m told it’s more a burnt orange.

Colors and Blindness

It’s been brought up a few times in the past how my parents learned I was blind because it’s humorous. I know this because when I tell the story in person people always laugh. I guess imagining four-year-old me slamming her head repeatedly into a coffee table is just hilarious that way. For obvious reasons, physical comedy is one of those things I just don’t understand, but to be honest I find the story funny, too, because it’s just the type of ludicrous that convinces me I live in a sitcom. Also, I don’t remember the coffee table [insert head trauma joke here], which acts as a sort of buffer of detachment for me.

Stories like that, I have come to realize, are important not just because they make people laugh at my lack of grace or even because they might “loosen up” to the concept of disabilities, but because they make blindness relatable. Even the least clumsy of us can think of a time where they’ve inadvertently injured themselves on something unseen.

That’s the thing with being born blind that I find both fascinating and relentlessly difficult: relating to “normal” vision. I’ve always seen the way that I do — a world absent of color, depth-perception, and distance vision. One of my favorite things is listening to someone describe a sunset. My father has a particular talent with conveying the breathtaking beauty in astonishing detail. Except as interesting and vivid a picture he creates in his description there’s a point where he might as well be speaking to me in another language because I literally have no understanding of colors.

Growing up I loved to color. As a very little kid I remember having those big crayons that are easier for little hands to grasp and use. There were eight: red, yellow, blue, black, green, brown, orange, and purple. I remember them so well because they were among the first words I ever learned to read and this was so important because the black and brown both looked the same to me. Even the blue crayon itself appeared the same, but I knew when I used it that it didn’t look the same as the coloring I did with those other two crayons. I didn’t really understand why those two crayons had different names when they looked the same to me, but I did know that tree trunks were brown and not black so that seemed a good enough differentiation to my little kid mind.

For some reason enjoyment of coloring is interpreted by adults on almost a continuum of skill so after several years trying to keep my giant crayons working inside the lines I graduated up to the regular sized crayons and that inevitably led to the 64 crayon box. If everyone has their own version of an Unsolvable Puzzle in their life, the 64 crayon box is mine.1 Do you know that there are seven crayons in that box with red or some combination of red in their names? I do because to this day I still don’t understand why there is a red-orange crayon and an orange-red crayon. And what the heck is brick red anyway? I mean, bricks come in all different colors!2

Anyway, getting back to the point, suddenly coloring was so very different. Before the 64-box came into my life I only had two crayons that gave me a bit of confusion and required some extra attention to use. When I went through my new big box of crayons and grouped the ones that looked the same I suddenly had more than half the box in a pile of “black-ish.” And, as I already explained, the labels were far less helpful than my trusty 8-pack. I remember I reorganized the crayons from their original setup where they are grouped by color into something that made more sense to me. Essentially I put my eight trusty friends in the front and just dumped the rest back in the box. When I was feeling particularly adventurous I might sneak out a “new” color to draw with, but when the coloring books were spread before me I only ever picked up a different color if someone handed it to me as a suggestion.

So, you’re probably wondering why I didn’t just ask someone why there were a bunch of repeated, baffling crayons in my new box. Well, for one, I grew up in that strange time when children were taught some amount of manners so telling my parents their gift basically sucked wasn’t remotely a possibility. But more to the point, I didn’t realize I was confused by the crayons. I knew what colors were or at least I thought I did. I mean, we went over them in school and I knew the names of them and various facts like grass is green. Anyway, it became a moot point because it was around this time that I became interested in other art forms like origami and sculpting and making anatomically incorrect horses out of clay for 4-H didn’t require knowing what the heck magenta was.

However, I’m pretty sure if I had tried to explain all that back then it would have been met with bewildered confusion because it happens constantly now when I try to explain it! Here’s an example:

Person: You know you have two different colored socks on?

Me: No. Why, what colors are they?

Person: Well, one is blue and the other is green.

Me: Interesting. They look gray to me.

Person: Well, they aren’t. *indicating each sock* This one is blue and that one is green!

Me:*baffled* Okay then.3

What happens is basically a communication breakdown. The person here is trying to politely convey that my socks don’t match by pointing out their colors and I’m Just Not Getting It. Unfortunately for me that isn’t an excuse because even the most intellectually deficient person on the planet understands what blue and green are. We know that we all have to be taught our colors, but we learn about them at such a young age and after we’ve already had a lengthy visual understanding of them that they are such an ingrained part of our psyche we literally can’t comprehend how someone doesn’t understand them. So, no I didn’t just miss a few days of kindergarten and somehow my teachers managed to forget to check if I got that particular lesson. I’m color blind. I literally do not perceive colors; I physically can’t.

Complete colorblindness is an accurate description for me, but it’s difficult to explain in a way that’s understandable to others because the absence of color and the ability to perceive it are independent of one another. Semantics aside, it’s also a far more rare type of colorblindness than is generally bandied about. Red-green colorblindness is the most common and essentially is the inability to distinguish between the two, which is due, at least in part, because these colors are perceived in hues of yellow, orange, and beige. So, often when I say I’m colorblind it’s understood as I’m seeing some psychedelic version of whats actually there when in fact I’m just not seeing the actual color at all. Yes, I know I said my socks were gray above, but in all honesty I don’t really understand what gray is any more than blue or green!4

What’s really confusing to try and explain is that I don’t live in some drab world of blacks-and-grays. I know this because I can tell the difference between a black-and-white film where things tend to melt together in a sea of monotone blobs and reality where there is a vibrant array of contrast. It’s at this point that I lose any ability to really explain the differences because I don’t understand them any better than any other person. If I could transplant my vision into someone else head they would perceive the way I see completely differently than I do simply because they have an understanding of color perception and would be aware of the absence thereof. The same goes the other way, without an understanding of it, I can’t really paint a picture of the way I see.

What will really bake your noodle is that I have some affinity for the color red. Physically I can’t perceive it, but I can almost always pick out brighter reds — they look, well, warmer — and as yet I can provide absolutely no reason as to why that is. So, while I may never have another anecdotal story to help bridge the understanding of my particular form of colorblindness, I can at least say without guilt that red is my favorite color.

Incidentally, I’ve been told it’s my color. ;-)

  1. Yes, I know there are even bigger crayon boxes out there; that’s beside the point.
  2. It’s also a matter of contention for me, since I’m on the subject, that orange doesn’t smell anything like an orange.
  3. This used to happen so often that for the longest time I only wore white socks because even if they weren’t the same socks, they matched and people didn’t feel a need to point out my mismatched socks to me. And then eventually I found that boring and also keeping white socks white is virtually impossible so I started wearing socks with all kinds of funky designs on them and they almost never match.
  4. Gray to me is everything that isn’t white or black and that’s way too much variety to be what is actually gray.

Before and After

When the seventh Assistance Dog Blog Carnival was announced I found myself in a minority: I got the theme straight away and I had an idea for what I wanted to post. Of course, as so often is the case with the ADBC I found that initial idea practically impossible to write. I didn’t expect the usual bout of Writer’s Block to be so profound since I was merely expanding on a topic I’ve touched on before, but after weeks of struggling to put fingers to keys I ended up missing the deadline completely

I think my difficulty with this post in specific was that I don’t like to dwell on the past. A lot of my childhood memories are not happy ones and a good portion of those are tied to my own mixed up method of coping with my blindness. In realizing that I also understood the most significant effect working with a guide dog has had on me: it’s healed me; I’ve grown to completely accept my blindness and I’m not haunted by the painful discomfort of my childhood.

As a child I was ostracized. My classmates made fun of how the nystagmus made my head shake; of how close I had to hold things to read; and basically any other thing they could think of. I didn’t understand my own limitations well enough to feel anything but shame for these huge differences that separated me from fitting in with the other kids. All I wanted was to be invisible and I did everything I could to not draw attention to myself.

Folded white caneThere’s a thin line between what I stubbornly refused to use because I didn’t want to and what I stubbornly refused to use because I didn’t need to. The white cane, for instance (pictured to the left) was a prime example of something that I really should have been making use of, but I didn’t regularly start using a cane until I was 16. Honestly, it’s a wonder I made it to 16 given how limited my vision is outdoors.

On the other hand, I really did not need the large print textbooks that were ordered for me every year. First, they weren’t convenient to use. They weighed a right ton and took up my entire desk when opened. Neither of which played well into my goal of invisibility. Second, I can read regular print! Other things like lighted magnifiers, monoculars, and telescopic glasses weren’t just alarming attention-grabbers, but just not all that useful for me. Except the general lack of understanding we all had about achromatopsia meant that my refusal was perceived as a misguided and stubborn refusal and for years I all but waged war with my TVI about what I would use, which was basically nothing.

So, it came as quite a shock to, well, everyone when I announced I was applying for a guide dog. I don’t think anyone knew how serious I was and I remember a distinct conversation with my father where he stated his opinion that my only interest in a guide dog stemmed from a friend getting her own. And, of course, I’d spent practically my entire life to this point doing everything I could to not draw attention to my blindness so the general feeling was that I didn’t need a guide dog. They were for totally blind people anyway, right? Even today I hear that same remark when, in fact, the number of totally blind people is very small. Most people who say they are blind — like me — can see something even if it’s only light. As far as vision goes, guide dog schools only require that the potential handler be legally blind.

The truth is I had wanted a guide dog since the moment I was first introduced to the concept. (Thank you, Sesame Street.) It wasn’t until I started to research schools that I fully understood how I met the requirements. I’m not proud to say that even though I had to affirm my need for and desire of a guide dog to my family as well as showcase my O&M skills for my application to a training school it took a few close calls before I really embraced using my white cane.

The thing is I can’t even blame it on being a sloppy or even poor cane user! Sure, I didn’t like using a cane. I disliked how it actively worked against my desire to be invisible. And not just because I was constantly whacking people in the shins! What it really came down to was that I still felt vulnerable. I wasn’t confident in what signals I got from the cane. I still found myself running into things I didn’t know were there. There was no real indication of whether a step was just a step or an entire flight of stairs. And, worst of all, while I was clearly noticeable with my cane no one seemed to respect my usage of it; I actually got hit by a car using my cane! Thankfully, they were going very slowly and merely knocked me on my rear, but it shook me up quite badly.

For me working with a guide dog is nothing like that. It was a difference that’s so pronounced that it wasn’t long into training with Dolly that I knew I could never go back. I was walking upright for the first time in my life, not hunched over, fruitlessly straining to see any toe trip in my path. I was finally able to walk at a pace I found comfortable, not cautiously stepping forward, trailing behind my friends and family. Most of all, I actually enjoyed working with my canine companion and we definitely were being noticed by, well, pretty much everyone. I wasn’t ashamed that I needed to utilize a mobility aid and I found myself happily chatting about her to complete strangers like a parent would gush about their children.

One of the most difficult things I’ve ever had to do was leave Dolly after three weeks of training so she could recuperate from her warty feet. I felt like a new person in so many ways after our short time working together, but I had to go home and spend a month relying on my cane once again. Perhaps it was just my own hatred of this lot I’d been given, but I think it only reinforced the general feeling my family had that I really didn’t need a guide dog or even more that I wouldn’t fully utilize her. But whether bystanders noticed right away or not, I fell right back into working with a guide dog like I’d been doing it my entire life.

Working with a guide dog is truly a life decision. Over the years it’s presented its own hardships and stresses. And there are times I find it the most frustrating aspect of my life. But I have absolutely no regrets. I’ve had the wonderful privilege of having three terrific partners to share my life with and each of them has reaffirmed how much better my life has been since I first picked up a harness handle.

Blindness Links

Things here are crazy. That’s really all I can say on it at the moment mostly because I just don’t have the time. But I thought I’d share these interesting links because they all are somewhat related to achromatopsia and are very promising retinal studies:

Blind Mice See After Cell Transplant — Really fascinating study on mice who apparently gained light perception, and possibly more vision through replacement cells injected in their eyes. There’s hope that this might benefit those with retinal damage or deformities, but the study itself is basically in its infancy.

Treatment for Retinal Degenerative Diseases — Listing of a bunch of clinical trials on various retinal disorders and degenerative diseases.

Applied Genetics Technologies Corp. Pre-Clinical — This particular study isn’t quite off the ground, but intends to utilize gene therapy.

Definitely curious to see where things go with each of these.

Weekly Photo Challenge: Wrong

Uschi lying on the floor looking very sad with her squeaky red ball toy balanced on her head

It’s quite often that people seeing me out and about with my guide dogs probe me with questions in an attempt to determine whether we’re a working team. However, the typical “is my dog in training” question never ceases to throw me because I’m of a mind that you never really stop training a dog. Even commonplace things such as obedience require constant reinforcement if you want the skills to be solid, especially in difficult or unexpected circumstances. Dogs really thrive on feeling that they are doing the right thing, too, so it’s nice to give them tasks that they will excel at and build from there.

Learning opportunities can present themselves anytime and without any warning. Take last night for instance, I was playing fetch with Uschi when the game took an unexpected turn, as it sometimes does when a blind person is tossing toys. The ball bounced off the floor and landed squarely on Uschi’s head. I took the moment as a prime one for a photograph, but Uschi seemed to be more of a mind that we were playing fetch wrong. Either way, we got a bit of down-stay practice and I got me a fun photo to share.

Lest you be worried over her downtrodden expression, I let her out of the stay right after taking this photo and she immediately went to work at trying to rupture my eardrums. Obviously, she’s no worse for the impromptu obedience lesson.

In completely other news, my post on achromatopsia from earlier this week was selected for WP.com’s Freshly Pressed feature. I’m still pretty blown away to be chosen. Honestly, I never expected it would happen, but if there was a post I could have picked to drive traffic to that would most certainly be the one. :-)